Living Well

The benefits of exercise

2011-12-16T13:36:00.000-08:00

I am continually surprised, since I rarely post here anymore, by people who come across the blog and have questions or comments. One such recent visitor, was David Haas. David is a believer in the benefits of exercise, particularly during, and after, treatment. Here are his thoughts:

ExerciseCan Give Your Body a Boost against Cancer

Exercisebenefits those that have cancer whether they have just been diagnosedwith cancer, they are being treated or their cancer is in remission.Of course fitness does not cure cancer and any exercise routineshould be under the doctor's supervision, but fitness is good forpeople diagnosed with any type of cancer, whether it is a commoncancer like breast cancer or a rare disease like mesothelioma.The advantages to the person with cancer who exercises are many, anddoctorsupervision and common sense should help dictate routines usingappropriate forms of exercise.

Following a Regulated andSensible Exercise Schedule

The health care professionals onthe team treating the cancer will be able to advise the individual ona reasonable plan of exercise that will not tax the system while thebody is fighting and healing from the cancer. For example, the bodyshould rest when a fever is present.

Now, moderateexercise of at least three to five sessions per week will promotehealth.Still, short and moderate physical action every day is usuallyrecommended rather than fewer sessions of ultimate exertion. Theactivity should be pleasant, enjoyable and rewarding as well assupervised by the medical team in order to be mostbeneficial.

Types of Appropriate Exercise

Thefitness routine should be continued by a determined decision, but thebody should not be overly taxed if it feels overwhelmingly fatigued.Still, a little gradual exercise program may actually build up theenergy level. People may want to take a short walk in the fresh airat first or just bounce lightly on a trampoline for ten minutes or soa day during the first week or so of exercise.

Walkingis one of the best types of activities for anyone and especiallythose who are ill. Other forms of exercise that are known to benefitthose who have cancer are activities such as Tai Chi, swimming andbicycling.

Advantages of Exercise for Cancer andHealth
Exercisecan actually help the body to fight against the disease of cancer.The activity can encourage the increased manufacture of white bloodcells and encourage the immune system. The fitness routine may helpenergize the body to survive.

Certainly, exercise hasseveral benefits that are noticeable right away such as reducing painand aiding digestion. Other advantages include but are not limited todeeper sleep, expanding lung and heart functions, and increasedenergy levels. These all play an important part to fight cancer.

I'd like to thank David for getting in touch, and sharing his thoughts. Like he says, exercise alone won't 'cure' cancer, but it can help the body combat its effects.

And with that, I'm going out for a long bike ride around Sydney. I wish everyone reading this blog (whether a cancer survivor, carer, or just interested reader a happy holiday - Live Well!

18 months Post Treatment

2011-09-21T10:43:00.001-07:00

My PSA reading, 18 months after treatment, is now 0.72. This is a slight rise (my 15 month reading was down - from 0.65 to 0.63) so unwelcome, but these are very small increases, and not to be fretted over at this stage. I spoke to the urology nurse and she agreed that it could be due to either normal fluctuations, or the often-reported 18-month 'bounce' when PSA levels rise for reasons no-one fully understands.

Since I'm about to go to Australia for 6 months, I won't be able to have another test at 3 months, but we both felt that the next test (due April 2012) will be quite an important one. Oncologists look for steadily rising PSA and the 'doubling' effect (i.e. how long it takes for PSA levels to double) as indicators that the cancer may be returning.

So, no reason to worry just yet. But I've no doubt I'll be a little concerned next April until I get the results. As someone said PSA used to stand for 'Prostate Specific Antigen' but once you've had treatment it becomes 'Prostate Specific Anxiety'!

Hands Up for Increased PCa Risk!

2010-12-01T15:45:00.000-08:00

Is this why I got Prostate Cancer? Because my index finger was shorter than my ring finger?

It seems crazy doesn't it? That the length of your digits might determine your PCa risk. But that's exactly what a report published today suggests.

Researchers at University of Warwick looked at the ratio of index to ring finger length in over 4,000 men, and found that, statistically, men with a longer ring finger to index finger are 87% less likely to have Prostate Cancer.

As you can see from the photograph of my hand, I fall into the high-risk group and, what do you know, I got cancer!!

Now before you all go looking at your hands, and panicking (at least those of you who don't already have PCa) please bear in mind that most men have a shorter index finger, but most men don't get PCa. So, on one level, it's just another of those statistical correlations which doesn't actually mean anything.

But, on another, it could be interesting, because it appears that the statistically significant correlation between finger ration and PCa risk is linked to a hormonal and genetic conditions found in the womb.

The genes HOXA and HOXD appear to control both finger length and sex organs. Additionally, lower levels of testosterone in the womb seem to be linked to finger length - as well as the risk of prostate cancer. There is a similar phenomenon seen in levels of estrogen and likelihood of breast cancer later in life, so perhaps there's more to it than coincidence.My mother conceivably had her breast cancer - or at least the pre-conditions for it, when I was an embryo, so I can see that higher levels of estrogen, might lead to higher levels of testosterone in the womb.

Does this mean that if you're looking at your right hand now (and I know you are) and your index finger is longer than your ring finger that you're in the clear? Well, not necessarily - and getting a yearly PSA test is a much better predictor. But, if you're one of those men (in the majority) whose index finger is shorter than the ring, it's another reason to get checked up!

In the meantime, can we do a straw poll of men who have had, or have PCa? Can you leave a comment to say if your index finger is shorter than your ring finger?

Feedback Needed!

2010-11-26T02:25:00.000-08:00

As regular readers will know, I post very rarely these days, since life has pretty much returned to normal now. My current PSA is 0.47, testosterone normal, and my consultation yesterday suggested that I only need to monitor this every six months.

So, the posts are a bit, well, dull, frankly.

Despite this, according to page stats, I'm now getting more people viewing this blog than ever before. I'm not getting carried away, here: in the ranks of uber-bloggers, I don't even register. But, if hundreds of people every month are checking in, I feel I should offer them something more than a running total of my PSA score.

So, let me know what you'd like me to post about. I'm assuming that, apart from friends and family, most people have a personal need for information about prostate cancer, and information of the sort that can't be found on the main information sites.

If you give me feedback, or direct questions, I promise to respond. If you'd rather not go public with your comments you can PM me at pricedav@gmail.com. If I don't hear from you, I'll assume that you're happy to read back posts on my progress - and if you're new here, you should either start at the beginning or, it time is tight, try here.

I suspect a goodly proportion of viewers have recently been diagnosed and this can be a scary time. If you're one of the new members to the-club-that-no-one-wants-to-join, take your time, please don't rush into surgery without considering all other treatment. I took 7 months to research and decide and it doesn't seem to have done me any harm: prostate cancer is almost always a slow-growing illness, so you have time on your side.

I look forward to hearing from some of you - and thanks for visiting!

PSA Scores 6 months post treatment

2010-11-15T14:57:00.000-08:00

I got my second 'uncontaminated' (that is, by casodex) PSA results back today. The first was 3 months ago, and 3 months after treatment: 0.45. Today's score was almost identical: 0.47. Further good news was that my Testosterone levels have normalised too.

This, I think is good news, as it suggests, to me at least, we may be at a 'normal' PSA level, and if it stays there, you'll hear no complaints from me. I have a consultation with my urologist in a week's time, and I hope he'll be as satisfied as I am, especially considering that most side effects have either disappeared entirely, or reduced to minimal levels.

So this will be the likely pattern for the next 5-10 years I guess. Periodic PSA checks, and watching for any 'spike' in the numbers. I have to admit, I got a little anxious over this one, as it was the first time I'd be able to see a possible pattern emerging, and I naturally feared any increase in the PSA level.

I suspect that this periodic anxiety never truly goes away - I know lots of men who experience it when the PSA test is due - but it should gradually diminish.

It's all about looking forward now, and being determined to live well!

Prostate Cancer: Knowledge is Power

2010-10-09T05:54:00.000-07:00

I'm currently in Australia, where this week the papers stated that PCa is now the most common cancer in the country - ahead of even Breast and Skin cancers. Quite surprising, but I also have read that most Australians, incredibly, are deficient in Vitamin D (primarily gained through exposure to sunlight. Their 'Slip, Slop, Slap' campaign has, if anything, been too effective. So, skin cancer down, but PCa up.

I was also reminded, through two conversations with friends, how important it is to fully understand treatments here. In one case a youngish man had rushed into having a prostatectomy which seems to have halted the cancer, but had devastating effects on his sexual function. He has left his wife, and suffers severe depression - an all too common tale. A further story concerned an elderly man, whose cancer has spread in spite of a range of treatments. He has now been on hormone shots for 4 years. Currently effective, but he's been told they'll stop working and he will become 'hormone refractory' between 3 - 5 years. I was able to suggest he consider making his hormone treatment 'intermittent' so that he prolongs the treatment's efficacy, by taking breaks and waiting till his PSA rises significantly. Many men have found this to significantly extend their lives and improve the quality of their lives during the 'holiday' periods.

It's such a shame that PCa - and a patient's options - is so poorly understood, and has such poor public awareness. I just missed September being Aussie Prostate Cancer Awareness month here, or I would have done my bit!

My Prostate Cancer Story (in brief)

2010-09-19T15:04:00.000-07:00

I've been really touched by the number of people who have been in touch with me lately, since I announced my retirement from this particular blog. The stats for the blog suggest that people typically have a snapshot rather than the whole picture.

So, for the benefit of the occasional visitor, here's the Reader's Digest version of my story:

March 2009 - routine PSA test shows up at 4.1; I decide to wait until a further test (in September) before thinking about a biopsy
May 2009 - get married in St Lucia; experience some urinary discomfort leading up to 'the big night'; visit doctor who recommends digital rectal examination (aka 'the finger'); decide to sort it out after I'm married
June 2009 - GP does the finger, finds nodule; when asked what the side effects of biopsy might be replies ' incontinence, impotence, death'; against better instincts decide to have biopsy anyway
June 2009 - before biopsy, registrar does another DRE (you get used to them); declares that ' you have a one in four chance of having prostate cancer, but that nodule isn't cancerous
July 2009 - deduce I have PCa whilst waiting to be told of biopsy result, thanks to over-eager researcher asking me to choose between clinical trials for watching/waiting and treatment; get referred to urologist who offers prostatectomy but advises to 'do your research'; Gleason score is 3+4 = 7 and PSA of 4.1 on biopsy;
July 2009 - much newly-wed 'why us?' angst, but we recover and decide to investigate High Intensity Focussed Ultrasound (carried out by UCLH in London) as preferred course of treatment
July 2009 - have MRI which shows no extra capsular spread - whew!
August/September - have additional, super-sharp MRI at UCLH which shows 'significant' spread of tumours in both lobes, and heading towards the exit - 'possibility of microscopic escape' read the report; still a candidate for HIFU, but side effects likelihood no better than radiation/brachytherapy
August 2009 - PSA test shows 3.7 - below national recommendations for screening - if I hadn't already had biopsy, I would probably have done nothing more for 12 months
September 2009 - Having met twice with David Bottomley at St James Oncology Institute, we decide to opt for 'triple-whammy': casodex hormone therapy for 3 months, single, high-dose radiation brachytherapy and short course of 15 external beam radiotherapy treatment
December 2009 - start hormone therapy to shrink tumors prior to treatment
February 2010 - PSA test shows 0.85; consider abandoning treatment and continuing with casodex - until told that long-term casodex would stop being effective
March 2010 - enter St James for single HDR brachytherapy treatment - all went well; given two weeks 'recovery' period before radiotherapy starts
March 2010 - start 15 session of EBRT at St James; relatively easy, but gradual onset of fatigue
April 2010 - radiotherapy ends, some fatigue, pubic hair loss, but nothing too difficult
May 2010 - continued casodex treatment has led to pronounced man boobs (with added tenderness) and low libido; told I can stop at any point but read that continued casodex usage after treatment can help prevent recurrence; decide to persevere for a further month
June 2010 - and that's the end of all treatment
July 2010 - first post-treatment PSA is 0.24 (good, though no doubt affected by continued use of casodex
September 2010 - PSA test after casodex is completely out of my system = 0.45; very positive and told that PSA may well fall still further in the coming months.

So, that's it, in a chronological nutshell. There's a lot more detail, and the accompanying feelings, to be found in the blog archives. There's also a heap of videos, books and research references that I found useful or even inspiring when doing my research.

If you've recently been diagnosed, please don't despair. Only 2% of men ever die of prostate cancer, despite it being present in an estimated 50% of 80 year-olds. The bewildering array of treatment options may seem upsetting at first, but it's reassuring later - because there isn't just a plan B with prostate cancer, there's a plan C,D E, and all the rest.

I can only hope that my cancer was comprehensively zapped during March and April of this year, but I have to live with the possibility that it may return in years to come. Play the percentages, it's your best bet. I researched that the treatment I opted for would allow men with my Gleason, PSA and MRI an 85% chance of being disease free after 12 years, and that seemed like pretty good odds to me.

It also suggested that there was a 2% chance of incontinence, and a 27% chance of impotence. neither have materialised at the time of writing, though I know there's always a possibility of 'late-onset impotence'.

All things considered, I'm glad I had treatment, though I know this is an over-diagnosed and over-treated condition. I may have been OK with 'active surveillance' but because I was young, it didn't seem like a sensible option.

Remember, we're all playing for extra-time. New protocols and new treatments are coming around every week. Every year we live increases the chances of a 'cure' for PCa, so don't ever give up hope, no matter how gloomy the prognosis.

It's not how long we live, but how we live that matters. So, get screened and in the meantime, live well!

(If you're a Tweeter, please re-tweet this to any men over the age of, say, 40)

The Blessing: Being Able To Help Men With Prostate Cancer

2010-09-12T15:04:00.000-07:00

Last month, I posted what I thought would be my last post on this blog. The need to move on was matched by the lack of any significant news - stopping seemed the sensible thing to do.

Since then, however, I've been astonished by the number of men who've written to me, and the number of visitors who still come looking here, even though there's nothing much to see, move along, folks.

Being able to pass on whatever knowledge I've gained about Prostate Cancer to men who've been recently diagnosed (and their loved ones) has been a great blessing, and helps me see that getting PCa has probably brought more good things to me, than bad.

So, I'll keep it going a while longer, though I may not post as frequently as I did whilst receiving treatment. It's humbling to get men telling me that this blog has helped them cope in the immediate aftermath of diagnosis, and I'll post a summary soon of the story so far, especially for new visitors.

3 months On - 2nd PSA results = 0.45

2010-09-12T14:47:00.000-07:00

It's now 3 months since I completed my last radiation session (though only 2 months since I stopped taking Casodex (the hormone treatment, used before, during and after treatment). The PSA has risen slightly to 0.45. My last results were lower than this,(0.24) but there are three possible reasons for the rise:
1. (and most likely) The first test was taken only 3 weeks after I'd stopped the Casodex - the hormones were probably still flying around my system, thus artificially supressing the PSA level;
2. this time around, the Casodex has almost certainly left my system, prompting a small rise - the wisdom of the crowds on various forums suggest is takes around 5 -7 weeks for Casodex to completely leave your system;
3. I'd been doing something a couple of nights before the test which is believed to elevate PSA (clue: it wasn't riding a bike)

So, I'm still happy with the way things are going (especially the artificially elevating PSA bit).

But it's funny how the notion of 'positivity' comes into the whole PCa 'journey'. People - always meaning well - talk about the need to 'stay positive' during treatment, when the truth is that's there no evidence to link a positive mental condition to a positive outcome. No, I think, the time to be positive is after all the treatment's over. Every single cancer sufferer, who wishes to become a cancer survivor, has worries of their cancer returning. It's just a natural, human, response.

In my case, I can be positive, so long as I feel armed with the information I'd need to put Plan B into operation should the need arise. I know, from the research I've done, that there are many alternatives available should the treatment turn out to have been unsuccessful. Knowing this helps me be optimistic, even about the unknowns of the recent treatment.

'PSA Anxiety' refers to the worry that comes with each test. I think it's pretty much unavoidable, so it's best not to have them too often.

I'm heading off to do a month's work in Australia soon, and I'll have another test in November - until then I intend to Live Well, staying positive, because I know what to do if things turn a bit negative.

The In-Betweenies

2010-08-03T15:38:00.000-07:00

Reading the ever-excellent Dana Jennings in the New York Times made me realise that I'm in between cancer (hopefully). Two years on, Dana classes himself as post-cancer, but I can't quite put myself into that bracket. I can't describe myself as still having cancer - my latest PSA reading is 0.24, which is lower than almost all 'normal' men. But nor can I really say I'm post-cancer - it's just too soon, and I'll need a lot more positive PSA scores before I can think of myself that way.

We had friends round tonight, one of which is working on some new cancer treatments, funded by Astra-Zenica. He works in translational medicine. I know, I hadn't heard of it either. It's quite complicated, but one of its aims is to speed the process between phases of trialling new cancer drugs and treatments, whilst still maintaining ethical standards. It's a difficult business, but for those of us who are in-betweenies, we can only wish more power to his elbow. The average 10 year life-span between Phase One (usually testing out new drugs in the lab, in glorified petri dishes) and Phase Three (trials on actual patients, before getting approval) feels too long when you're living with the possibility that you might one day need that Plan B.

I said at the start of this voyage that the first priority of PCa patients was to 'buy time'. But an equal priority is adjusting to your new condition, and recognising that 'beating' cancer is an illusion - you're always living with the prospect that you're clear, but only for now. Even Lance Armstrong talks freely about the prospect that his cancer may return many years down the line.

Dealing with this ambiguity and uncertainty might seem like a chore, but actually, it feels like a gift. It's also a transferable skill. So I now find myself much more accommodating of uncertainty in my work life, and more appreciative of the constancy of the love from those close to me.

Not so super-stud

2010-07-10T16:18:00.000-07:00

My posts are becoming less and less frequent as 'getting back to normal' continues. For the past week I've been playing golf with two dear Californian friends and I have had no time to post.

However, I did say I'd report on my high testosterone reading. Having had a second test now - and suffered all the jokes about being a 'stud' because the first reading was abnormally high - the trend appears to be downwards. The latest reading was 36. The upper 'normal' limit is 30, so it's heading in the right direction. Whilst there is a good deal of evidence to suggest high testosterone = longer life-span, it's also the case that any lingering cancerous cells need testosterone to feed upon. So, I'm quite glad not to be considered the PCa equivalent of George Clooney.

It will now be at least 3 months before I get any more tests. For those people who've been checking in here regularly, let me thank you, but suggest that you might want to find something better to do. This has been a 12 month odyssey which started with the inspiration from Lance Armstrong, and I noticed today that he's released another inspirational ad from the Livestrong Foundation.

It's entirely fitting, therefore, that I end the way I began: by urging anyone who has been recently diagnosed with cancer to read 'It's Not About The Bike' by Lance, and take (realistic) inspiration from this inspiring man. I shall be cheering him at every stage of his final Tour de France, knowing that so many people around the world are realising that, through his example, cancer isn't the death sentence it used to be.

Live strong and Live Well!

First Post-treatment PSA Results

2010-06-28T15:47:00.000-07:00

I'm really sorry for not having posted more often but, as I said in the last post, I need to get back to life as normal.

So, this will possibly be the last post for a long time, since it contains news of the PSA result I had today, and hopefully, I won't have another one for at least two months. There's no point in just posting for the sake of it.

OK, so 3 weeks after I stopped taking the hormone tablets, I had my PSA checked. The result was 0.24, which is pretty good, considering anything less than 0.1 is deemed 'undetectable', and that my PSA is expected to fall still further for a while yet. My highest PSA score was 4.1, so I'm pleased.

Of course it pays to take a balanced view: the PSA levels fluctuate quite a bit for the first year, until things settle down, so it doesn't make sense to get too excited one way or another - and I still have hormones in my system. The general pattern should be downward overall, but I could expect a slight rise once the effect of the hormones wears off.

However, there was one surprise. I expected that my testosterone levels would be flat-lining at this point, but I had them checked, out of curiosity. Somewhat surprisingly, my levels are way above normal. My GP was equally taken aback by this, and we've taken another sample, as a false reading seems a distinct possibility.

There's increasingly evidence to suggest that levels of testosterone correlate to good health and well-being, so I perhaps shouldn't worry. But there's also the fact that PCa cells are believed to feed off testosterone, so you might not want too much of it floating around your system, especially in the months following treatment.

I'll investigate further, and report back.

All in all though, a level of close to 0.1 is more than I could have hoped for in my first post-treatment PSA, so it's another cause for celebration and thanks!

Tired but Happy

2010-05-23T13:32:00.000-07:00

I've had number of people email me, wondering how I am, since it's been a long-ish while since I last posted. Well, the answer is, I'm fine, I've just been very, very busy. I started back at work full time last week and had my first week away in London since mid-March. I'm also working on two houses. I'm trying to sell my little house back in Merseyside, so there's been a lot of to-in and fro-ing with paintbrush and lawnmower. And when that's not happening, we're putting time into our house renovation in Leeds. so still more physical work. I simply couldn't have done what I've done this week-end (in unseasonably hot weather) a couple of weeks ago.

It was also strange being back in the thick of meetings, but very enjoyable. I was relieved to see that I could actually follow what was going on, and even make sensible contributions - odd how, with even just a few weeks out, you feel like your brain has downsized permanently.

It's all part of the normalisation process, I guess. And it's a great feeling to be very active and not feel wiped out. Of course, I still have no idea on the state of any lingering cancerous cells (the radiation process continues to zap them for some time afterwards) but the best I can hope for is that everything is working properly and, so far it's been much better than I'd anticipated. I see Dr Bottomley, my consultant, in 2 weeks and then I stop the hormone tablets at the end of June. The only PSA test which will give a reasonably accurate picture of how successful the treatment's been, won't happen until October. Until then, I intend to enjoy the summer.

Inevitably, the process of normalisation means that I'll be posting much less frequently here. But take it from me, if there's anything to report, I'll stick something up. I believe that if you register as 'a follower' (yes, a ridiculous label, but see the panel left) you get alerts when there's a new post, so doing that might save you from logging in only to find no new stuff.

It's probably an opportune time to thank everyone who has commented, or emailed me, or found other ways to wish me well. Your encouragement has been priceless, but I hope you will be glad to here a little less of me in future. This is definitely one of those occasions when no news will be good news.

Keep Taking The Tablets...

2010-05-10T22:46:00.000-07:00

Almost at the end of the 2 weeks post-radiotherapy which are deemed the worst part. Still feeling pretty good, and just the odd side-effect here and there. This weekend, for example, I noticed, while taking a shower, that I'd lost quite a bit of hair - and it wasn't off the top of my head. I'm assured that this is temporary and it will soon grow back, and that, dear reader, will be a blessed relief.

No, if I'm to be honest, I suspect the challenge now will be more mental than physical. First there's the adjustment in seeing yourself, not as a cancer sufferer, but as a cancer survivor. Although I've only known about my PCa for 9 months, it's impact is so profound that it inevitably becomes part of your identity. Then there's that fact that you never had any symptoms while you were 'ill' with it, but with treatment - which is hopefully going to 'cure' you - you actually see quite profound changes. In my case, I've gone for the pre-pubescent boobs and the trussed chicken look, which, let's face it, is a bit weird. You don't actually see any of the good stuff - the cancer cells being killed - you just have to take that on trust. So, shedding your sense of having cancer seems to be almost counter-intuitive, but I know I have to have trust in the process, and be a patient ex-patient.

Finally, there's the inevitable 'have I done everything I could have?' question. I know only too well that anything I could do to make the treatment more effective, is minute compared to the brachy, hormone and radiotherapy I've had. But I've been doing some research about when to stop taking the hormone tablets following the treatment. There seems to be an argument (though far from proven) that continuing with Casodex for 2 months following external beam radiotherapy might improve disease-free rates. At any rate, I've lived with the side-effects since last November, so it won't do any harm to keep on them until July, and it means that I'm doing everything, that I'm aware of, to make what I've just been through as effective as possible.

Since the effects of the hormone tablets don't wear off for at least 3 months, however, you might not see me on too many naturist beaches this summer.

One week on

2010-05-05T12:00:00.000-07:00

It's been 7 days since my last radiation treatment. I was told this could be the most difficult part of the recovery, since the radiation has built up to its maximum dose. But, actually, I feel pretty good, all things considered. My energy has improved since last week, and the bowel and urinary issues are definitely easing.

So, a sense of normality creeping back in. For one thing I've shaved about half an hour from my morning ablutions. I no longer have to be spending quite so much time on the loo, (urinary flow and proctitis - look it up). And though I'm still using the suppositories (for said proctitis), I've dispensed with the cream down there, and I don't have to use the aqueous cream round the midriff, as the sunburn signals didn't appear.

Honestly, it was taking so long to get ready for the day, that I was thinking of taking a packed lunch to the bathroom.....

Speaking of the back-door bullets, I had an interesting email exchange with a dear friend of mine this week. She was the first person to ring me up when I notified people of my initial diagnosis, and I was grateful again for her wisdom:
She: 'How are you, now that the treatment's over?'
Me: 'Pretty good. Still got some bowel problems, but nothing major."
She: 'The whole bowel thing might take the longest.Are you talking to a Chinese or other herbalist? They’re damned clever with their disgusting teas, you know….'
Me: They've given me some suppositories, but I can't bring myself to use them'
She: 'Wait till you taste 'em....'
Me: 'Stop, they've given out very explicit instructions to make sure you put them in the right end.'
She: 'I meant the TEAS!!'

Elvis Has Left The Building.....

2010-04-28T07:19:00.000-07:00

Well, that's it. All treatment done. I had my 15th blast of radiotherapy at lunch-time.It was another one of those 'have I got a comfortably full bladder? Yes, I have, but if they don't come for me soon it's going to be uncomfortably full' moments. But all seemed to go well.

Then it was off round to see lovely Natalie, the Uro-Oncology Clinical Nurse Specialist, for the final briefing, and to be told what to expect. An added bonus was a quick catch-up with Dr David Bottomley, who gave me an unexpected diagnosis: no need to keep taking the hormone tablets! I might just take them for another week or so, just to be safe, but that wasn't expected. I thought I'd be on them for another 3 months.

And then saying my goodbyes - after which I got very teary indeed.

Because I really don't know where to begin to thank these people. Without exception, everyone I've come across (David, Natalie, and many different radiographers) have been a credit to their vocation. Caring, thoughtful, supportive,thorough - I don't have enough words.

St James Hospital is affectionately known as 'Jimmys' around Leeds, and I consider myself blessed to be living only a few minutes away. And doubly blessed that it underwent a huge investment in its Oncology Unit (complete with art gallery)a year before I got cancer. It's been a place of calm, of refuge (when you inevitably have a wobble) and, most of all, of hope. Credit to the current government for their investment in the National Health Service, and shame on those, on both sides of the Atlantic, who tried to turn it into a thing to be scared of, in the recent US Healthcare reform. I can't imagine how I would feel with prostate cancer, if I was living somewhere where the service wasn't free at the point of delivery. To undergo this treatment without worrying if I had insurance cover? You can't put a price on that.

I'll do the philosophical stuff in a future post. This is just a love letter to some of the most dedicated professional people I've had the joy of knowing. And I should also thank all the other patients who, like me, found themselves reading trashy celebrity magazines (a bit more substantial reading matter in the waiting room would make the place perfect) while waiting to be called. The men with the on-the-edge bladder fullness, the women with the tell-tale bandannas, and those less fortunate than me, whose cancer was visibly apparent. Far from being a place of anxiety and depression, those waiting rooms exuded a sense of utter normality - it's the thing I expected the least, and yet it's the most powerful sign that the awful terror that used to be cancer (and its treatment) is being brought to its knees in places like Jimmys.

When I first read Lance Armstrong's book I was surprised (as was Lance) at the statement made by the marine in the chemo waiting room: 'We are the lucky ones'.

Never did I feel that more than today.

Ah, the side effects.......

2010-04-23T02:10:00.000-07:00

After today I will have had 12 radiotherapy sessions, with only 3 more to go. I started this phase of the treatment on April 7th, so it's a gradual build-up of radiation, spread over 16 days. The side effects are now kicking in and will continue (I'm told) for 2-3 weeks after the last radiotherapy session next week.

I highlight these numbers because I know that, in addition to friends and family who read this blog, there are a number of men, who may be considering, or about to start this form of treatment. I know that when I was doing my research, it was important to hear the patient experience, in addition to all the official guidance notes you can find on the net.

Therefore, this post is especially for potential future fellow travellers and, as such, will contain rather too much information for those who know me well. Instead, you should click here, and only read this if you really want to know about graphic bodily functions (and I'm fairly sure you don't).

So, now that they've all gone, let me give it to you straight. The bottom-line is that, if you're unlucky enough to get cancer, then prostate cancer is one of the least painful to get. All the way through this I've been pretty much asymptomatic.

But nobody gets away scot-free from cancer. The recovery from the brachytherapy procedure has been pretty easy - much easier than if I'd chosen prostatectomy surgery, or even High Intensity Focussed Ultrasound. Side effects from both brachytherapy and the external beam radiotherapy are mainly confined to bowel/anal problems, and urinary issues.

I've always had a 'delicate' constitution, so it was no surprise, this week, to experience some diarrhea. The beam has to pass through the rectum and the bladder, so it's inevitably going to irritate both. It's like IBS, and I'm hopeful that it will pass once the treatment finishes next week, but some men are left with intermittent proctitis. Again it's not something you'd relish, but it's better to have that than cancer. Urination is more frequent, and often feels incomplete, particularly at night, but I'm assured that will stop in a few weeks - and many men with an enlarged prostate have to live with that anyway.

Finally, most people have less energy a couple of weeks into the treatment, and that's certainly been noticeable for me. You just have to recognise the fatigue, and adjust accordingly. I'm certainly seeing days go by without having done much, but it would be the height of stupidity to just plough on regardless, as I don't think that would help the treatment work fully.

I'm not going to go into graphic detail about the side effect that bothers most men when making treatment decisions - sexual function - out of deference to my wife and friends and family. Suffice to say that all prostate cancer treatments have implications and risks in that respect, and I've chosen the form of treatment that - given the staging of my cancer - provided the least risk. Sadly, most men panic themselves into opting for radical prostatectomy, which has the worst outcomes on sexual function, compared to other treatments. Another reason for doing as much research as you can before making a decision.

And that's pretty much it. I sit in the large waiting room for treatment, along with all the other radiation patients, and I think how lucky I am. Most people seem to be having 7 or even 8 week courses of treatment (mine is 3) and the bandanas are the tell-tale sign of the women who have already had chemotherapy. Friends seem to assume that I'm going to have the very unpleasant side-effects associated with chemo, but it's not the case - I've had no nausea, no hair-loss, no weakened immunity.

And if you've been reading this, not because you've got PCa, but because you're a hypochondriac (nothing to be ashamed of, I still am - the only difference now is that I have some justification) then get your PSA test done, and you might be able to avoid all of this!

And then you can Live Well, with or without PCa.

Half-Way House....

2010-04-19T11:33:00.000-07:00

I'm now just over half-way through the radiotherapy treatment (8 sessions done, 7 to go). By the end of this week, I'll have just 3 left then a meeting with Dr Bottomley, and that should be it for my trips to St James. It's all zipping by....

So, it's perhaps understandable that I've been feeling a bit tired over the week-end. Mind you, for the past few weeks I've been going to bed with a Guatemalan Nurse every night, so that might have something to do with it. My wife got her in for me, so it's all kosher.

So, here she is. OK, she's skinnier than even Kate Moss and is somewhat inanimate, but I've grown quite fond of her. The Mayan people apparently used these worry dolls for all sorts of things, and I have a Health Worry doll under my pillow for the period of my treatment. You're supposed to be able to sleep on it, and by the morning the worry people have taken the worry away.

Though I have to say I'm not particularly worried about this treatment. My PCa acquired friend, Ross, is two weeks ahead of me, though on an identical treatment path. So, we had a celebratory dinner at the week-end and he's doing very well indeed. I'm hoping to get away as lightly, but we'll just have to see.

Mind you if they've got one of those Mayan 'Builder Worry' dolls out there, I wouldn't mind having one. This used to be our living room....

The Recovery Position

2010-04-13T07:08:00.000-07:00

....er, this is it. This is how I have spent a goodly proportion of my days since undergoing brachytherapy. We saw this monster of a reclining chair on ebay (it didn't look quite so big in the photograph, and we forgot to check the dimensions) and I thought 'that'll do for me, perfect to watch the big, new, widescreen HiDef TV' which we also bought on ebay. Unlike the TV, which we're keeping, the chair will have to go back on ebay once I'm through all the treatments - it's just too big. It makes me look like a Munchkin - or Rupert the Bear checking his email.

Truth to tell, I'm feeling a tad sorry for myself today, because with 4 external beam radiotherapy treatments down and 11 to go, I seem to have at least one of the side effects earlier than expected: a constant urge to pee. Apparently, they can give me something for it, so I'll check when I go in today. But that, coupled with some fatigue, got me a bit restless.

So, I decided to do something around the house. Our builders have gone on holiday this week, so it's a perfect time to do a little light D-I-Y. The TV cabinet, on which the aforementioned telly sits, is just a bit too wide for the alcove it should occupy, so is positioned at a jaunty angle. It doesn't bother my wife, but it bugs me. It's just the lip thing at the top which stops it from fitting flush, so I decided to measure it, and then cut a bit off either side. The gap between the two walls would just accommodate the cabinet without the lip, so I took to it with the hacksaw. Now, I'm not the best at woodwork, but the finish isn't going to matter too much as it's going to fit flush in the alcove, right?

Wrong.

I forgot to allow for the bloody skirting boards. I've now stained it in the futile hope that my wife won't notice it (back in its jaunty angle) when she gets back in. But, it's a vain, futile, hope, and I just know that having to wee every 20 minutes is going to be the least of my worries when she gets back in.

Time to get back in the chair. I think I'll just assume the recovery position until May comes around......

Week One Done

2010-04-09T09:50:00.000-07:00

Anticipating that I might be a bit tired in a couple of weeks, I dusted the golf clubs off today, and played my first game of the new season with my brand new swing (I change swings every year, but it doesn't seem to make any difference) Anyway, I'm quite excited: I shot a good score when I was expecting to stink the place up and, I managed to drink a litre of water at the same time! This might not seem much to you, but I'm a bit of a camel when I'm playing golf, and now I have to drink 3 litres a day while being treated, so needs must.....

Then, I got home, had a nap, and realised, on my way to the hospital that I had only had one cup of tea since. Question: how can you spot men with prostate cancer in a hospital car park? Answer: they're the ones drinking a big bottle of water as they walk to the entrance.

This hydration timing is a bugger. I was hoping they wouldn't call me quick, and I was slugging away like John Mills in 'Ice Cold in Alex'. But I was called in early, so I was worried I'd get sent with the 'Puny Bladder Size' letter admonishment. In the event I needn't have worried. The radiology staff are brilliant. They took yet more scans before the treatment today, and then adjusted my hips, shoulders, pelvis - all whilst avoiding touching the embarrassing bits. In fact they were so meticulous that all that last-minute swilling was well through me by the time the beam got started, and I was starting to get a bit twitchy.

They say that urinary urgency is a side-effect of radiation but I think it's just all the last-minute swillage you have to do. In fact no side effects at all so far - mind you, I've only had two treatments. Still, only two more full weeks to go, and tonight I'm allowed some wine. We've decided that if we can only have one bottle of wine a week this month, we'll make sure it's a bloody good one!

Breaking 80, and a top-notch Aussie plonk = Living Well.

And it's warm out!

Phase Three Starts...

2010-04-07T15:04:00.000-07:00

I had my first session in the Radiotherapy Unit at St James today. I didn't actually receive any radiation today - that starts tomorrow - but I had scans done, measurements taken, and got acquainted with the machinery. I have to say that the new oncology unit at St James (the largest cancer unit in Europe) is a deeply impressive place. The staff were uniformly caring, and happy to answer as many questions as I had (lots). If you have to be in hospital every week-day for three weeks, this is about as relaxing a place as you'd find.

They have 13 treatment rooms which, presumably, are similarly equipped with a state of the art radiation machine. Nothing like an MRI scanner, these things are quiet (ish), open and revolve around you to ensure you get zapped from different angles. Tomorrow's session will feel no different than today's as the treatment itself is painless - but I've been told I need to drink more fluid. You need to have a full bladder and empty bowel each day, so that the prostate stays in the same place. I didn't realise it went walkabout at the slightest hint of a drink.

2-3 litres a day is the recommended amount and it's a delicate timing issue: top-up your levels too close to the session and your bladder may not be correctly 'inflated'; too early and you're just praying your slot isn't delayed! I also need to lay off spicy food, and can only touch alcohol on Friday evenings, since I have the week-end off, before starting up again on Mondays. We've decided to buy a single, expensive, bottle of red wine each Friday - if quantity is restricted, let's at least have quality.

Apparently, I'll not experience any side effects until about 10 sessions in, but they'll continue for a few weeks after treatment ends. No point in worrying about what they'll be - we're all experiments of one. All in all, I'm just glad to be getting it underway, and, with only 15 sessions needed, compared to the more common 37+ sessions of the external beam monotherapy approach, I'm hopeful the side effects won't be too bad. I'm glad the minor urinary and bowel irritations caused by the brachytherapy procedure have pretty much gone, so I'm starting out feeling as ready as one can be.

Finally, as I write this, the news has just come on TV of Martina Navratilova's breast cancer diagnosis. God, another media interpretation which has to see cancer as a 'battle' to be won in 'the fight for her life'. Cue fellow tennis players praising her fighting spirit which will undoubtedly see her achieve 'Game, Set and Match' for her disease. The reality, unfortunately, suggests there's no evidence that a 'fighting spirit' (whatever that is) improves one's chances. These sorts of showbiz stories do a great disservice to legions of quiet, unsung folk who just get on with their treatment, seeing it as something which will be what it will be. As Lance Armstrong says, as many people who fight, end up succumbing, as those who 'accept' - it's really all about the stage the cancer is caught at, and the quality and choice of treatment. Her case also shows that even doing all the right things - eating well, being incredibly fit - is no guarantee of avoiding this disease. But doing these things, in my mind at least, will offer your body the best chance of minimising side effects and, potentially at least, make the treatment slightly more effective.

Anyway, her prognosis seems as optimistic as mine. Live well, Martina, and good luck with the treatment.

Has It Gone yet?

2010-04-02T15:30:00.000-07:00

10 days after HDR brachytherapy and I'm doing well. Bit of aggravation with the rear exit, but that's normal, apparently.

So, naturally, my thoughts turn to the next stage: radiotherapy, starting next Wednesday. I'm actually quite looking forward to it, though I know that, towards the end, it might have a few unwelcome side-effects.

But you inevitably start to wonder if this next step might just be a bit of extra insurance. Thus far, I hadn't given a thought to the process of radiating the cancer - at what point might it all be gone? Now? Half-way through the 15 up-coming treatments? Ever?

It's not the thing to admit to when you're in the midst of treatment - conventional wisdom demands 100% positivity - but I've found myself this week looking at potential salvage treatments, should my current strategy not work out, long term. I don't see this as fretting - I've realised that my way of living with cancer is not to see it as a kill or cure thing, but a series of challenges.

While I'm confident that, by the end of April, the treatment will have eradicated the cancer, I have to accept the possibility that some rouge cells may have escaped and could be floating around my system, and might show up again, way down the line. But the numbers show that, statistically, I'm 85% likely to be disease-free in 12 years time. They're pretty good odds. But I honestly think that this is what living with cancer is: it's not a question of winning or losing 'a battle'. It's about making sure that you can 're-set the clock', so that any progression might be 10 years away, and by then who knows where we'll be in medical advances? So then you try to re-set for another 10 years (like, say, through PDT). And then another 10 years, should that fail (step forward Intermittent ADT). That should get me to, let's see, nearly 80.

I can't quite believe that my attitude towards cancer has changed so much. From the point my mother died of breast cancer when I was 20, I saw it as the thing that would cut my life unnecessarily short, and therefore a source of terror.

But It's not how long you live, it's the quality of life that matters, so re-setting the clock is OK with me.

Live well!

Four Days After Treatment

2010-03-28T12:30:00.000-07:00

...and doing well. It hasn't quite been a walk in the park, but it's not been particularly difficult either.

The brachytherapy technique has left me with quite a bit of swelling and bruising in the nether regions, but frozen peas have been a godsend in that department. The most damaged areas appear to be at either end of the food cycle. Because I have an already enlarged uvula, that was always going to be sore. It's swollen up so much that I feel like I'm swallowing it. Purely in the interests of medical research here is a photo:

Attractive, or what?

I'll spare you the photograph of the other end, but suffice to say that I wish someone had told me what swelling down there might do to one's ability to 'keep a clean road through you' (as my granny used to advise). I'm reliably informed that the forthcoming external beam radiotherapy sessions may well swing the pendulum the other way - on balance I have to say I'd prefer the feast to the famine.

Ah, the joys of blogging about your bowels....

The less visible impact is what all this poking and infusing has done/is doing to the prostate. I've had varying dosings of something called iridum 192 inserted and then withdrawn (this last bit is the distinguisher from the low-dose implanted 'seeds' approach also used in brachytherapy. So, I'm not radioactive!). But, what actually happens to the cancerous cells during this process?

I'm ashamed to say that until I've had a bit of time on my hands this week, I hadn't really thought about it - I should have read this stuff before the treatment, I guess, but there comes a point where you just have to trust the medics.

Anyway, apparently, iridium works by attacking the DNA of the cancerous cells. Now, I bet you couldn't say how long normal cells live for - I certainly couldn't. The answer is quite surprising: just one day. Cells are pre-programmed to 'commit suicide' after a day, to be replaced by new kamikaze cell-pilots. This process is called apoptosis (pay attention, there'll be a test at the end). In cancerous cells, the DNA doesn't give the cell the information needed to die. Radiation kills the DNA of the cancerous cells , thereby artificially bringing about apoptosis: the cells die off. This is partly why I can't see cancer as somehow malignant - these cells are just natural survivors, that's all.

Of course, in killing off the cancerous cells, iridium 192 also zaps neighbouring healthy cells . So given the amount of radiation I was given (and am still to get), the prostate itself isn't going to be much use after all this. They have to nuke it, inside and out, to be confident of ensuring that no cancerous cells can avoid apoptosis, and set up shop elsewhere in the body. The skill of the radiologists and urologists lies in doing this whilst avoiding too much damage to other functioning parts in that area. Only time will tell how successfully that's been done in my case, but Dr Bottomley has assured me that the procedure went very well - so I have every reason to be confident.

OK, class dismissed.

Phase Two Complete

2010-03-25T14:21:00.000-07:00

I'm back home after spending 2 days getting the (single) High Dose Brachytherapy treatment at St James in Leeds. It was quite a dramatic day and, because this is a relatively new treatment, I'll give the full story - but here's the squeam alert: this report contains some graphic deail and if at any point you think 'too much information!' just click here. You can access it at any point....

High Dose Brachy is quite distinct from the Low Dose 'seeds' implant version. With Low Dose, the seeds remain in you and you are therefore 'radioactive' for a while (not as dangerous as it sounds) High Dose has usually been done in two sessions but the version becoming more popular, comes in a single one-off dosage. In order to get the right amount of radiation in the correct area of the prostate both protocols use a 'template', which guides up to 14 thin catheters through the perineum, into the prostate. (The perineum is the area between what we in the North know as the 'back passage' and your scrotum - yes I always wondered what that bit was for. Now I know). In order to 'see' what he's doing, the surgeon inserts an ultrasound wand up said BP (don't forget, you can watch kittens here).

Hence the 7.00 a.m. enema. But, shortly after that, I got a visit from the anesthetist to tell me that he wasn't prepared to put me under, as he'd not got clearance from the Heart Hospital in London, regarding my hypertrophic cardiomyopathy. So, with visions of having to repeat the enema treatment in a few days time, I was saved by a last-minute phone call, so I was whisked off to theatre at 10.00 a.m.

About 5 hours later I was back on the ward. I can only assume it went well, as the registrar described it as 'text book'. Frankly, at this point, I'd been throwing up spectacularly (I don't react well to general anesthetics) so it was all a bit of a blur.

Today, I didn't feel too bad - a bit sore, but that's understandable, as every orifice has been utilised (I'll spare you the catheter story). I now have 2 weeks before Phase Three starts: 15 sessions of External Beam Radiotherapy (EBRT).

It's been a roller-coaster of a couple of days, but two things stay with me from my brief stay in the oncology unit: having shared a ward with non-prostate cancer sufferers, I realise the truth in the statement that this is one of the least worst cancers to have, and secondly, if you're going to do something about PCa, (and watchful waiting is classed as doing something in my book) getting an early diagnosis is critical.

If you're male, and over 40, and reading this, please know your PSA reading! As Terry Herbert says, be enlightened, not frightened!

Plans Failing....

2010-03-22T03:29:00.000-07:00

The plan was to have a nice quiet day before heading into hospital tomorrow. Nice meal, maybe a final glass of wine (from tomorrow I'll be off alcohol until April 28th) and an early night..... that was the plan anyway.

As I write, the house is filled with tradesmen of all descriptions: bricklayers, plumbers, electricians, I'm expecting that bloke off that house make-over TV show any minute. The Bathroom is being dismantled and a new central heating system is being installed. The electricity is going to be switched off and there'll be no hot water tonight. Why? They arrived a couple of days early, apparently - oh joy.

Actually I don't mind, but the bedroom will need to be evacuated tonight, so probably not the ideal preparation. Ah well, I should sleep tomorrow - and the swanky new oncology unit at St James has, so I'm told, a plentiful supply of hot water, electricity and radiation.

It sounds a bit weird, and indeed it is a bit weird to think that, in a couple of days, I'm going to be given quite high doses of radiation to a part of my body you never previously knew existed. But now that I know more about it than anyone ever wishes to hear, I feel quite protective of it.

Well, I'm sure it'll be fine. Dr Bottomley is one of Europe's finest at this procedure, and it's a brilliant hospital. And when I get out on Thursday, I will hopefully have neutralised many, many cancerous cells in that prostate. With a few more blasts of radiation due in a couple of weeks to get anything more that might have sneaked out to the outer casing for a quick cigarette.

Thanks for all the kind messages of support - I really appreciate them. And I look forward to telling you all that isn't too grisly, when I'm on the other side of treatment. Live well and live strong!

PSA Falling...

2010-03-19T16:04:00.000-07:00

I decided to get my PSA levels checked out immediately before surgery, so I could do a comparison on the other side of treatment. Latest reading is 0.85, half of what it was 3 months ago, which in turn was half of what it was 6 months ago.

It doesn't mean a lot, except perhaps for the thing that you're not supposed to mention at this point, but most people think it anyway. I'm going into treatment feeling confident but, statistically, there's a 15% chance of the cancer returning within 10 years. So, you just have to accept what comes after, and deal with it. Not 'fight' it - I've never thought of it as a battle. Today, I came across Dana Jennings' blog, and I feel like an inarticulate fool alongside his elegant way with words. As he says, words are truly inadequate when dealing with cancer, though not because the spectre is overwhelming. Quite the reverse, they're just imprecise: we're not 'victims' nor are we even 'survivors'. And the unlucky ones don't 'lose' a battle with cancer - that makes it sound like they were somehow 'weak'. Jennings contradicts himself, by saying that words are inadequate, and yet uses them so powerfully. Please read his blog, especially this post. He nails the part that all of us shy away from.

The good news about my latest PSA is that I know that if the course I'm set on fails to prevent recurrence in 10 or so years, I know that the hormone therapy offers another powerful deterrent. There are so many more tools available to us than was the case even 5 years ago. And, as I said in an earlier post, we're all in the business of just buying time.

Off The Road at Last

2010-03-18T11:27:00.000-07:00

I'm traveling home after 4 days in London (4 days is too much for any sane person in London). I am feeling somewhat strange. I find myself actually looking forward to having my prostate punctured in several places and having radiotherapy in just 6 days time. Why?

Because it will mark the start of the longest period of time that I will have spent at home for, ooh, years. I can't actually remember how far back I'd have to go to find a two-month period in one place, but I suspect it might be my teens. Yes, that long.

Mind you, I might be climbing the walls after the first month, I've become so used to an itinerant lifestyle. But I suspect not. For one thing, once I start the second phase of my treatment (15 sessions of external radiation beam in St James hospital) I might not have as much energy as I usually have, so the wanderlust will be dampened. But, it's more that I will have lots at home to keep me occupied: I'll still be working, just not as much; we have the builders in, so there's plenty to do there. And I might just be able to get back to doing some proper meditating, sleeping properly, and use the opportunity to take stock of where I want to be on 'the other side' of treatment.

I'm naturally a little apprehensive - it wouldn't be normal to be otherwise. But I'm with the best possible staff in one of the best equipped hospitals in Europe for High Dose Brachytherapy, so there's a lot to be thankful for the NHS.

And besides I'll be out for the count. Wish me luck!

My New Sporting Hero

2010-03-13T14:16:00.000-08:00

For every cancer victim, there's usually a source of inspiration that they draw upon. For many, many people, it's Lance Armstrong. That's been the case for me, for obvious reasons.

But for less obvious reasons, I've got a new hero: Comedian, transvestite,slightly podgy, seriously untrained, and all-round sporting-God, Eddie Izzard.

Yes, his mother died of cancer when he was 6. But it's his achievements in her memory last summer which have turned me into a gibbering, repetitive, dweeb. I've just watched Episode Two of the 4-part documentary of his epic run around the British Isles. At this point, he's done 21 marathons in 23 days, in the worst of a British summer's weather - I just keep mumbling 'unbelievable' over and over again. And I know that he will eventually run 43 marathons in 51 days.

Now, I've run - no, raced - 10 marathons in my life. I started in New York, running to raise money for cancer research, and in memory of my own mother who died of breast cancer when I was 21. All conventional wisdom said you would need to train for at least 18 months before attempting to break 3 hours for a marathon. So, I naturally wanted to do it with 11 months training behind me. (I can empathise with Eddie's determination to ignore all of the professional advice). I nearly did too, clocking 3:05. Eventually, I got my best time down to 2:53. If I'd known then that I had a genitcally inherited heart condition (hypertrophic cardiomyopathy) I would never have even have run one, let alone ten!

But I loved pushing my body to its limits. Yet, after every race I would be walking backwards down stairs, and not running again for at least 3 weeks. So, I don't care that it takes Eddie 8-10 hours to complete the distance each day - the fact that he did it over and over again, is just gob-smackingly awesome.

The amount of money he's raising (disappointingly, hovering around £300,000 so far) is only part of the reason for watching this series. The ability of the human spirit to just bloody keep going, and with such good humour, when everything tells you to give up, has never been better illustrated.

Till you're blue in the face.....

2010-03-08T10:37:00.000-08:00

This month (March) is Prostate Cancer Awareness Month. What, you weren't aware of it? I'm not surprised - I don't think I've seen anything in the press or media to mark the occasion. All we've had is 'whip-it-out-Webber' (that's Lord Andrew of PCa) telling Jonathon Ross that he was looking in a skip outside his hospital, post-surgery, for his prostate. I suppose it's too much to ask for a celeb who puts forward the need to get checked out, and the need to carefully research your options if you are one of the unlucky ones?

The Prostate Cancer Charity are doing their bit, but the media just seem uninterested in going beyond TV faces 'bravely' battling prostate cancer. Their March Awareness Campaign revolves around 'doing something blue'. I can't see that one getting people excited, somehow, which is a real shame, because they mean well, and have managed to get M&S on board, which is no mean feat. But there's often a particular type of male customer who uses M&S.

And their recently published research shows that PCa is becoming a class issue: if you're working class, you're 3 times less likely to know about the PSA test which will give you early warning signals. And if you're an over-50 African-Caribbean man, you're 3 times more likely to get PCa, so there's an even more urgent need for awareness among our working class black communities.

I guess this was the case for a while with breast cancer awareness, but I would guess that the class divide there isn't quite so stark nowadays. We've got a long way to go with PCa in this country.

Still, I'll do my bit: I've just bought a blue dressing gown for my two-night stay for brachytherapy at St James in two weeks!

Up-date on the Warriors

2010-02-22T20:37:00.000-08:00

A while back, I highlighted a couple of personal stories from friends who have given me support and/or inspiration. You may remember Jeremy Bacon, who, despite, an unnerving discrepancy over the location of his tumour (is it in the left or right side of the gland?) opted for focal HIFU treatment in London.

Well, it looks like his decision, and faith in the experts at University College London, has been well founded. In his first PSA test following his treatment, he showed a highly encouraging 0.4.

Considering he still has a largely functioning prostate, that's a pretty good result - 0.1 is considered undetectable. So, it looks like they picked the right side of his prostate to ablate! He's recovered well, and is a great advert for doing your research.

Speaking of which, I realised this week that over 1,000 visitors have been drawn to this blog since I started, from over 25 countries. It's truly humbling, and I had no idea that men would find this place helpful. Far too many men are either rushed or panicked into treatments without knowing the full implications. Also, too many men are guided towards courses of action by people who recommend their own particular specialism (though this has not been the case with me).

We need to know as much as we can about this disease - including the stuff which we often don't want to hear about - so that we can form reasoned decisions about the best course of action. New forms of treatment, and new combinations of existing forms of treatment, are appearing every day.

If I've managed to contribute to lessening the panic, and providing a patient's perspective on the maze of possibiltiies open to newly-diagnosed men, then I'm truly grateful.

If you're new here, please email me or leave a comment - don't suffer in silence!

Not So Random Acts of Kindness...

2010-02-21T06:24:00.000-08:00

I'm writing this from Toronto, where I'm having my last overseas trip before being confined to barracks (or at least Leeds) when my treatment starts.

I can never quite get over the dislocation of jet travel. 24 hrs ago I was just home from my pre-treatment assessment at St James, and here I am now, looking at the CN tower, and contemplating a few drinks and a nice meal.

The assessment was fairly straightforward: ecg, bloods and a hundred questions. I saw the fantastic Dr Bottomley again, and let him have a feel of my man boobs. Since I upped the dose, on Dr Bottomley's recommendation, to 150 mg of Casodex (hormone treatment), the breast enlargement and tenderness has increased quite markedly. I now have the cleavage of an elderly ex-supermodel (smallish, but pendulous) and there's a 50p size hardness under each nipple - which are now becoming 'innies', rather than their normal 'outies'. It would all be a bit disturbing, but he assured me this was quite common. He also advised that it will take a few months - even after the treatment and medication ends - before the cleavage disappears, since the hormones are in your system for a while.

We also discussed what might happen during and following the single High-Dose Radiotherapy. I'd watched a video of HDR during the week, so I had a pretty good idea what it entailed. Well, I didn't actually watch all of it. It was the first time I felt a bit squeamish, and glad to think I'll be out for the count. My perineum (you'll have to look it up) will be like a pin cushion, except the needles are quite radioactive and, well, too much information I think. You also don't want to know about the bed-stuff either, but let's just say it'll be different, but hopefully, it will still be.

Then I spoke to the senior nurse about the 15 radiation sessions. What I hadn't accounted for was the cumulative effect of the radiation. Because the low dose beam they shine into you gradually builds up over the 15 sessions you apparently feel worse after the treatment, than you do during it. So, I was cautioned to expect 3-4 weeks of not feeling great after it.

But in the scheme of things, it's a small price to pay, and I'm keen just to get on with it. I was struck (again) by the kindness of all the staff at Jimmy's - I really do feel I'm with people who care about you as an individual, and that's very moving. So, I had a welcome sense of calm as I left. And I got my first perk of the job: as I left I was given a chitty for the car park - apparently, cancer patients get free parking - result!

At Last - Treatment Dates!

2010-02-15T15:22:00.000-08:00

I'm getting worse. I really am. I'm breaking the cardinal rule of blogging: thou shalt keep a regular flow going, even if thou hast nothing to say....

It's not through intent, honestly. It's simply been that now, that I know my treatment dates (see below), I'm like a kid in a sweet shop, trying to gorge myself before I have to throw up. So, having been in California a couple of weeks ago, I then did a mini-UK speaking tour last week. This week I'm trying to catch up with myself, before leaving for Toronto at the week-end.

I don't point this out to show how busy/important/transient/shallow I am. Just to remind myself of why I'm going ahead with my treatment: that no matter the risks, the life I've got is one I love, and I want to kick on with it as soon as possible - only this time cancer-free!!

I have my high-dose radiotherapy treatment on March 24th at St James Hospital in Leeds, England. After 2 weeks to recover I then begin 15 sessions of low dose external beam radiation. So I should be all done by April 28th. I'm confident that I've not only chose the best form of treatment for my particular circumstances, but that I've also gone to the right place: 'Jimmy's' is known as an exemplar in brachytherapy treatments.

So, I've got every reason to be optimistic. But I know this isn't the end - it might just be the end of the beginning. I'm going to live with this condition for a very long time and, in a weird sort of way, I rejoice at that fact, because it will remind me to make the most of everything that comes along.

In that respect, I take inspiration, again, from the man who got me started, when I first got diagnosed: Lance Armstrong. Here is a video in which he talks candidly about life beyond cancer, and taking risks.

Live strong and live well!

On Being Cancerous

2010-02-06T06:08:00.000-08:00

On balance, I guess I'm lucky. My particular cancer was discovered early, and it has few, and mild, physical effects. But not much is ever written about the psychological effects of living with cancer. Nor is it easy to talk about – you don't want to depress loved ones, or indeed yourself, so 'keeping positive' is the default mode.

I'm aware,, however that this blog is read by people who have been recently diagnosed and when I was in that position I wanted to know what to expect – good and bad. I'm getting my pre-treatment assessment in a couple of weeks, and within two months of that, my treatment should be over – in theory, cancer-free.

But looking at PCa forums, and talking to others, it's clear that the cancer stays in your head for a great deal longer. I stayed with people in San Diego recently who have become good friends. One of them has been in remission from breast cancer for 9 years. It was great to be able to talk honestly. One night I'd had a fitful sleep, and I was conscious of pains – little pin-pricks really – around the pelvic area. I began to tell her this and before I could finish she said, '….and you think it's metastasised? That used to happen to me all the time. It takes a while, but you gradually stop worrying about it spreading, or returning'.

And then there's the effect that cancer has on others. I had expected that some people might steer clear of me, as I'd heard that was quite common, once I was diagnosed. I can honestly only say that there have only been a couple of instances of that happening - and even then the cancer might not be the reason for keeping their distance. But, I'd be lying if I said that part of it didn't hurt. I just have to remember that this disease does funny things to people's head. Despite the huge medical advances in recent years, cancer still has a terrifying hold on some people's psyche.

I used to worry myself stupid that I'd get cancer, like my mother. Even when it's theoretically gone, I'll probably still worry about it coming back, not to mention the period of up to 2 years when the radiation side-effects can deteriorate.

But I'm sure that the fear won't be the same. There's no question, though, that it has changed me – hopefully for the better. I've only had it for 7 months and it's getting hard to remember what I was like pre-cancer. There's a TV ad for the McMillan Cancer Charity doing the rounds. One of the characters says, 'Today's been a good day. I hardly thought about having cancer'. I know just what he means - this is a life-long condition, mentally, if not physically. But that's not necessarily a bad thing, if it reminds you to live your life to its fullest.

Countdown

2010-01-31T09:39:00.001-08:00

For those who visit here regularly, you might have thought I'd disappeared off the face of the earth – actually that's not a great opening line for a cancer blog, but never mind. There's no great mystery: I've just been very busy with work, and there's not much to report. When I started keeping a blog, even though the golden rule of blogging is to post regularly, I was determined never to write something titled 'Disconnected Ramblings', or 'Random Thoughts' – there's already enough of those around the blogosphere. And you really don't want to know about the tenderness of my nipples, due to the hormone tablets - that doesn't qualify as news.

So, many apologies for the radio silence, but here's the scoop this week: I got my time for the radiation treatment. Well, not exactly a time, but at least a timeframe: sometime between the middle and end of March, and a little sooner than I'd anticipated. The news was very timely as, having had a great trip to California, I was feeling a bit down being back, and just want to get it started now. So, I can now familiarise myself more fully with HDR brachytherapy and short-haul IMRT, and get myself as fit and healthy as possible, in preparation.

It also means I can plan my workload accordingly. It's been important for me to keep busy leading up to treatment and have post-treatment plans for work. Seeing the treatment as an end in itself isn't a good idea. It's a means to an end, perhaps, but I'm realistic about the fact that, eve if the treatment is immediately successful, I'll be living with the uncertainty of recurrence for a very long time. So, best to see it as a stage, albeit an important one.

And it does have some perks. I'll have 5-8 weeks when I will be pulling back on work, and will be at home for the longest unbroken spell in about 10 years.

What Cancer?

2010-01-12T22:42:00.000-08:00

After my last post, things have been very hectic, and I've not had time to keep the regular supply of posts going.So, thanks to all those who kept checking in, anyway. I'm sorry there was nothing to read. We spent Christmas in Portugal and Spain, and now I'm in Southern California doing some work, but also getting some rest and relaxation in - as the picture makes clear.

We've all got a bucket list - things we want to do before we croak. On mine I've always had 'play golf at Torrey Pines'. Well, this week, thanks to my friend Larry (who is a resident of San Diego and can therefore get on this world famous course at ridiculously cheap rates), I was able to cross another one off the B-list. Not only that, I shot 66!! (OK, I admit it, that was the score for 14 holes, before it got dark).

You can see me grinning like a Cheshire Cat reflecting on how close I was to a hole-in-one on one of the par 3s. It was a beautiful, warm sunny January day, and it was just a joy to be alive. I've hardly thought about having cancer this week, and that's a combination of being in a different (and warm) place, and of having made my mind up on treatment.

It feels good, and in a couple of days I'll be sharing a panel discussion in LA with Yoko Ono (ooh, get you!). I'm currently so full of the joy of living that she can say anything she likes - just as long as she doesn't sing!

New Year and Finally Made A Decision

2010-01-06T15:30:00.000-08:00

After spending Christmas in the rain in Spain, I've spent the early part of the year shivering in the snow and doing any final research before my meeting today at the HIFU centre in UCLH.
After 6 months, I think my quest has come to an end. Mark Emberton saw me today. He's kind of 'Mr HIFU' in the UK, and looked over my MRI and listened to me talk about my recent consideration of single-dose HDR at Leeds.
He feels that the side-effect odds with HIFU are actually worse then with brachytherapy, because of the location and size of my tumours. So, in the end, it was a bit of a no-brainer. He also spoke very highly indeed of David Bottomley's skills with HDR and the follow-up Image Modulated Radiotherapy. In Mark's view the 'cleaning up' of any possible breakthrough on the prostate capsule's edge is better addressed by radiation than ultrasound.

So, that's it. I just need to get on the list for Leeds (it'll probably be late March/early April). After I came out I got a little bit emotional, not particularly because of a sense of relief. No, it was rather more of gratitude that I've been lucky enough to have come across people like Mark E and David B. They're not only eminent surgeons, they're also humble, caring and hugely sympathetic individuals. I hear of cases where prostate cancer patients have been shouted at for daring to question their urologist - nothing could be further from the truth in my case, and I'm truly grateful.

Back On The Revolving Table

2009-12-21T15:09:00.000-08:00

Last Friday I had a consultation at St James Hospital Leeds to discuss a treatment option that I hadn't really considered, or at least not this version: High Dose Rate Brachytherapy. The reason I found myself veering from my original choice (HIFU) came after the full implications of the most recent MRI became clear: that I wasn't eligible for focal ablation through HIFU. If you've been paying attention thus far (and I'll be testing you at the end) you'll know that, in terms of getting rid of the cancer, one treatment is pretty much the same as the other, but the focal ablation offered the lowest side-effects rates seen so far.

But, once it was clear that I'd need the full gland treatment, those rates of erectile dysfunction and incontinence go up and effectively bring it back within the pack. So, back on one of those Chinese rotating servers:: surgery? No thanks, couldn't; hormones? just had one, thanks; radiation? hmmm.... not sure if I'm hungry.

One of my fellow travelers had recently been ruled out of HIFU, and was impressed by the impending treatment soon to be offered a St James, so I thought I'd go back and talk to Dr David Bottomley. Here is a man in whom the National Health Service can feel incredible pride. He's got everything you'd want in a surgeon, a kind and gentle manner, with no attempt to 'sell' any one course of action, and a desire to talk to you like a grown-up - a soft Irish accent doesn't harm either. I'd originally met him last summer to discuss low-dose brachytherapy, but this time I wanted to talk about high dose rate brachytherapy.

Sorry to get technical here, but stay with it, it makes sense. Most people associate brachytherapy with the permanent implanting of radioactive 'seeds' inside your prostate, and it's had a long track-record of success. But, truth to be told, no-one really fancies a therapy which subsequently advises you to keep children away from your lap, as you're a little bit, well radioactive, for a while. The high dose version now being offered is part of a triple threat. First, you go on the hormones to shrink the tumour. Then you have a single high dose rate of radiation (previously only available in two sessions) - but there's nothing left in, and you leave the hospital with no Homer Simpson green aura around you. Finally, you get 15 sessions of a process known as Intensity Modulated Radio Therapy. The theory behind this is that any microscopic escape from the prostate can be 'mopped up' by these sessions where a fairly low-dose of radiation is given to you daily (but only for a few seconds) Mon-Fri for 3 weeks.

This new combo-treatment has been trialled in Canada, with very promising results, and acceptable side effects - better on paper than the form of HIFU I'm being offered. So, I need to consider it carefully, but only after I've had one more meeting with the HIFU people in London on January 6th. Maybe then, finally, I'll be in a position to make a firm and lasting decision.

Those of you who have been following this whole saga from July are probably thinking 'Oh for GOD's SAKE, make your mind up!' But, as the kindly Dr Bottomley said while I was leaving, 'You'll feel a great sense of relief when you do decide, but only if you're absolutely sure about it'. So, another 3-4 weeks of deliberation is worth it, don't you think?

If You're New Here....

2009-12-13T00:37:00.000-08:00

I'm aware that some visitors here might not have a specific interest in my case, or want to trawl through all the archive posts. Instead they may simply be interested in learning more about prostate cancer, and how to prevent it, or assess risk of progression.

If you're one of these, I came across a really simple, layman's terms, video explanation recently. Unfortunately I don't have the option of embedding it here but you can find it here.

Regulars, on the other hand, can skip this!

A Turn of the Tide?

2009-12-09T11:00:00.001-08:00

I got my first bit of news yesterday which showed my condition is actually improving. My PSA, after three weeks of low-dose hormone treatment, has more than halved: from 3.7, down to 1.7.

Whilst I know that this doesn't necessarily mean the cancer is on the retreat - and I also know that PSA would probably start to rise again on cessation of the tablets – it means a lot, psychologically. Being able to actually see the tide starting to turn makes you feel a lot more positive. It also makes you feel that it's worth putting up with a few minor side-effects, if this reversal continues.

Does this mean that the tumours are now physically smaller? Don't know, but it would be interesting to find out. Shrinkage might mean that when I eventually have the treatment (whatever treatment that might be!) the medics may not have to get quite so close to the extremities of the prostate, thus improving my chances of avoiding the nasties (aka as incontinence and impotence).

There is another intriguing thought which comes to mind, however: if my diet and supplement regime was keeping the PSA stable (as it has been doing for some time), might a continuing fall, brought about by the casodex, be 'held' at safe levels without the need for treatment at all?

Don't worry, I'm not seriously contemplating it, but it makes you wonder. For now, though, I'm finding staying in the Premier Inn at Southampton Airport Parkway (it's a long story) an unusually uplifting experience.

Time for a blast of Elbow's 'One Day Like This' at full volume, I think.

Speaking Too Soon

2009-12-05T06:49:00.000-08:00

I've been quiet on here for a little while, partly because I've been a bit down, to be honest, and it doesn't seem right to bore you with it all, when this is supposed to be an up-beat, positive take on Prostate Cancer. But I also vowed to be honest in keeping this journal, so I suppose I should ensure there's a balance between the two sides of living with this illness.

I've spoken too soon, on a couple of fronts. It seems like my hope of being able to take Casodex (hormone treatment designed to keep the tumour in place until my treatment, or even shrink it) without any side effects was a little optimistic.

I seem to have a number of peculiar strange things happening, but not the common ones of hot flashes and breast tenderness. In fact it's been the opposite - I am really susceptible to the cold and have skin 'chills' quite a lot. I also have muscle pains and, most surprisingly, a dry throat and hoarseness. I'll be in the middle of saying something in a meeting and suddenly find myself coughing and unable to speak. It's a bugger, especially for someone who'll be doing quite a bit of public speaking in January and February. My consultant at UCLH says I can just stop taking the Casodex - it's a low-risk strategy, apparently.

But the other bit of presumption suggests that I should try not to leave off the hormones until absolutely necessary. I received a copy of a letter following up my telephone conversation with the consultant at UCLH. Now, it seems that the MRI report which I had there, has implications beyond those that I grasped from the discussion. I reported earlier that my only HIFU option was now full gland treatment, since there was shown to be 'significant' cancer in both lobes of the prostate: bilateral, to use the technical term. The letter now defines the tumour as 'left side abuts the capsule and is suspicious for, although not definitive of, T3a. This is no different than what I was told - except for the change of wording: from 'possibility of microscopic escape' to 'suspicious for'. The other thing I hadn't been told was that the HIFU treatment was not likely to be the last, as the location of the tumour increased the risks of side-effects, so they'd have to be 'cautious' in their first treatment, and that there's a 'high possibility' of residual disease. This means that there'd be a good chance of needing a second 'clean-up' procedure, which in itself increases further the side-effects risk.

It might just be that the hormone disruption has affected my mood, but I'm not exactly thrilled about the prospects now, and I'm going to have to consider the potential of Brachytherapy all over again (its side effects risks compared poorly to focal lesion HIFU treatment, but knowing what we now know, there isn't much difference).

So, I've realised that, with PCa, it isn't just the aggressiveness of the cancer cells, it's also where they're located, that matters. My biggest tumour is near 'the apex' of the prostate, which is not the best place to have it.

Hey-ho, I need to remember that all this new information makes very little difference to the long term prognosis - which is still very good. It just means more rounds of consultations, and trying to make a decision that I thought I'd already made.

In the meantime, I shall try to stay warm and heed my own advice........

Hospital League Tables - Good or Bad Idea?

2009-11-29T16:38:00.000-08:00

I work in education. Conventional wisdom (which rules out Ed Balls) says judging one school against another - especially on the basis of their exam results - is unfair, and not very illuminating. But hospitals, it seems to me, are a slightly different kettle of fish. Not just because what happens there can be, literally, a matter of life and death. But also because it seems to me that teachers (even the best ones) have limited influence on whether a child chooses to learn or not. We don't quite have the same situation in Accident and Emergency.

So, I was interested to see today's news story on Doctor Foster's (did he come from Gloucester?) report on hospitals and its supposed validity.

Without getting drawn into whether such stats are reliable, I'll just share one (true) anecdote. Two criteria in judging underperforming hospitals in the Foster Report were the number of operations which had gone wrong, and the number of hospital-induced infections. One of the bottom 12 NHS trusts was St Helens and Knowsley, in Mersyside. One statistic which should have been recorded into the criteria, but wasn't, was my son's collapsed lung operation, performed last year, simply because we were so relieved that he survived it, that it didn't seem right to complain - but I wish we had done.

After he'd been home a week, we discovered that the surgeons had stitched over a 1/4 inch piece of plastic tubing which was left in my son's lung. Perhaps, not surprisingly, having a foreign body in your lung can be infectious and so my son subsequently contracted MRSA. Happily, because he's young and in otherwise good health, he made a full recovery - but it could have been catastrophic, instead of cripplingly anxious.

So, I know it's completely unscientific, but my own experience backs up St Helen's and Knowlsley's position as one of the worst 12 hospitals in England. I love the National Health Service, but perhaps we need these kinds of assessments to keep the overall standard of care extremely high.

One piece of good news: I will be getting HIFU treatment next year at University College Hospital in London. I also have my hereditary heart condition monitored there, even though it's a couple of hundred miles from where I live. So, I was glad - but not surprised -to see that UCH came out top. Best in the the country - well done, guys - remember your league position when you wave that HIFU wand in my direction.

What's Killing Darcus Howe?

2009-11-27T04:55:00.000-08:00

I had high hopes of a series TV investigation into prostate cancer, and why it affects black men more than white. Howe seemed intent on making it an example of government not caring about black men, whereas the (Asian) documentary filmmaker was arguing that black men's fear of the digital rectal examination was at least a powerful factor in not getting screened.

It soon descended into a depressing piece about Mr Howe's personality and his drinking habits. The overall mood woud have done nothing, in my view, to encourage men to be screened. It was full of dramatic language (as you can see in this clip). The central point about getting screened was largely lost through the obvious plot of almost physically forcing a nephew of his to be screened. As he looked considerably under-40, it was no surprise that he came out all clear. But is he likely to want to be re-tested again when he hasn't got Darcus shouting at him?

What should have shed light on a genuine problem (male attitudes to cancer screening) become a rather sad film about an elderly, angry, man. So we're still waiting for the film on PCa that generates some light on the subject. This was just heat.

Bone Scan Results

2009-11-26T14:55:00.000-08:00

Five words in total: 'No evidence of metastatic disease'

Five more words: 'Oh, thank you very much'

Anxious? Me??

2 Weeks In And No Sign of Gynecomastia Yet....

2009-11-25T10:03:00.000-08:00

...that's man-boobs, for the uneducated. In fact, 2 weeks after I started taking hormone treatment (Casodex 50 mg) I don't seem to have any side effects. I read today that it somehow doesn't block testosterone, so that's good. Mind you, I don't know if it's having any effect. I guess that'll show when I have my next PSA test next month. Of course it might also be that it takes longer than two weeks to trigger side-effects. There is one side-effect I'm experiencing, though it doesn't appear to be listed anywhere: I'm always starving hungry! I need to exercise more often if I want to avoid ballooning.

I'll post on last night's PCa documentary 'What's Killing Darcus Howe' when I've calmed down a little..... now, where did I put those pretzels?

Brothers In Arms Guest Blog Part Three

2009-11-22T12:24:00.001-08:00

The third of my guest bloggers deserves a special mention. I've never had the courage to tell him but, 3 years ago, when I had a suspicious DRE and got myself into a real state about the prospect of PCa, George Hardy told me – in his typically forthright way – to get a grip of myself, as my PSA was a mere 3.7. (Ironically, I probably did have PCa at that point, though the urology nurse later said that I had a 'normal' prostate.) He also pointed me in the direction of Jane Plant, and I significantly cut down my dairy intake. So, when I was subsequently diagnosed in June, George was again the first person I turned to for some practical advice. It helps that we're almost the same age, come from the same town (Jarrow) and support the same football team (Sunderland). But, more than that, George has helped me, and many others besides, because his own story shows that statistics apply to the general, not the individual, and that the right mental attitude makes the difference between cancer 'sufferers' and what Bernie Sigel calls 'exceptional cancer patients'.

“A few days before my 54th birthday at the end of March 2005, I decided to see my GP about frequent night urination. On 24th March a blood test revealed a PSA level of 182.0 ng/ml . From that day things moved on at such a speed it`s almost a blur to me now. I was staged at T4 (metastatic) and Gleason 3 + 3. The Gleason score is clouded in mystery, and I suspected it was higher

Shortly after, I discovered the work of Prof Jane Plant regarding breast/prostate cancers and diet. My wife and I were invited to her home to meet her. She is a truly amazing, inspirational woman, and for such an eminent scientist, a lovely down to earth person. (George is featured in Jane Plant's book 'Your Life In Your Hands'). I finally got to see an oncologist, 19 weeks after diagnosis. He dismissed my theory that the tumour should really be a T3b by informing me that there was pelvic floor involvement.....first time this had ever been mentioned... most definitely T4 and that I must have Radiotherapy.

In September, I started 37 treatments of Radiotherapy – I had my final session on November 11^th, with a PSA of 0.9, though with a few urinary problems, which cleared up shortly after the last treatment. After RT ended, I'll have to admit to some days of depression. I felt really low for a while, as though the whole thing had finished in an anti-climax. However, I'm told that this is quite normal.

There then followed 3-monthly hormone injections (Zoladex), which lasted for 2 years. They were very effective in keeping PSA down, but the drop in testosterone meant I was permanently exhausted. At the beginning of 2007, I switched to Casodex tablets. I feel sure that stopping Zoladex was right for me. The tiredness was just too much to cope with after 20 months. It seems to me that it's only guys who have had the combination of radical radiotherapy PLUS the hormone injections who experience such extreme fatigue. I've known others who have been on Zoladex alone for 5 years and not experienced this type of exhaustion.

In September 2007, I came of all treatments. It's incredible that 30 months previously I was told I had maybe 2 or 3 yrs left to live. In my heart I believe that I was just plain stubborn (and lucky) that I decided to fight the urologist's treatment plan, and that the combination of HT, 37 Radiotherapy treatments PLUS keeping strictly to Prof Jane Plant's suggested diet all worked together beautifully.

In September of this year I celebrated two years since the end of treatment. This past year has seen me hit unexpected troubles - bowel problems and a spiral down into depression which lasted much longer than I'd have wished. The good news is, I am finally over those problems.

I hope my story may help any of you who has experienced such an unexpected downward turn when everything seems to be going so well in your life. It happens, and you CAN get through it. Hard as it may be at the time, you just have to accept that it's part and parcel of our battle, and just one more skirmish to get through safelyI am too sensible to say I'm cured, as I know the beast could return with a vengeance, but for now I can feel at rest for a while.”

Don't Frighten Them Off, Darcus!

2009-11-17T07:22:00.000-08:00

There's a highly dramatised piece of personal testimony by Darcus Howe in today's Health section of the Guardian. Subtitled 'why prostate cancer is a race issue' Darcus chronicles his 'remarkable recovery'. In doing so, he commendably draws attention to the higher proportion of black American and Caribbean men who are diagnosed with Prostate Cancer, sadly, now including Mr Howe himself. (Though happily, the story has a happy ending with Darcus now pronounced 'disease-free')

But it's a sloppy piece of analysis: attending his local hospital, near Brixton, Howe notes that there were a 'disproportionate number of black Caribbean men in the urology clinic'. Really? In Brixton?

Race and genes undoubtedly play a significant part in the incidence of cancer, but so does diet (or else why do rates for Asian men increase when they adopt Western lifestyles?). Early screening is the key to many cancers, no less prostate cancer. Mine was diagnosed after my PSA score crept over 4.0. In Darcus Howe's case it had risen to 30, suggesting that he hadn't taken part in regular screening. Why do men avoid screening? Because they have an irrational fear of both the process, and the possible results. Here, Howe did our gender no favours at all. His doctor 'penetrated' his rectum - it's a painless finger up the bum, Darcus! Don't be such a wuss. He describes radical prostatectomy as the one alternative to the 'the devastation that chemotherapy brings'. Not true - there are a wide range of treatment choices these days. I've just started hormone therapy in order to contain my own tumours, prior to treatment. I'm not sure I would have done, however, had I read this article first, so dramatic are the apparent effects. But lots of men go through hormone therapy, and radiotherapy with few side effects.

'From diagnosis to cure, I died a thousand times, consumed as I was - and still am - by demons of doubt'. Yes, cancer is always a scary thing to deal with. Personally I watched my mother die of breast cancer, and it was distressing to say the least. But we're only going to persuade not just black men, but all men, to get tested, if we keep the thing in perspective. Less than 3% of men, aged 50 and living in the UK, will die of prostate cancer. Better screening means that over 90% of PCa diagnosed is early-stage and therefore curable, irrespective of race. If you want to mount a campaign, Darcus, start by addressing men's often irrational fears surrounding diagnosis and its implications.

Prostate Cancer - More Common Than We Thought?

2009-11-17T04:27:00.000-08:00

I've just been watching an excellent presentation on incidence, risk and prevention strategies related to prostate cancer. Before you click on it, do bear in mind that it's looooong (90 minutes), but the first part is perhaps the most interesting.

There's one really striking stat which June Chan (the presenter) highlights: she refers to over 1 in 4 men being found to have prostate cancer when the whole trial cohort was biopsied. So, possibly, a > 25% 'true' incidence, rather than just the 1 in 6 who are said to have it across the population as a whole. (It's often speculated that over half of men over the age of 80 have cancer present in their prostate). What's perhaps even more striking is the revelation that, in some studies of Chinese men, incidence can be as low as 3 per 100,000! When these men move to the USA or UK, however, the rates of PCa start to rise, suggesting a dominance of diet over genes.

So, the two main points of the presentation are: what are the dietary lifestyle factors which might be causing such a rise (dairy, red meat, bad fats, lack of vitamin D), and what do we do about screening - if 1 in 4 was the true stat, and most of those are 'indolent' (i.e. they'd never kill you) are we overtreating PCa?

The really encouraging point in her presentation was that mortality rates (probably due to better treatments of the really aggressive forms) continue to fall. In the US, they're now getting close to only 2% of the male population dying of prostate cancer. For someone like me, who's right in the middle of everything (risk factors, PSA reading, spread and aggressiveness of cancer) it doesn't help make a decision. The thing that would really be the breakthrough - and there's a ton of research now going on in this area - is finding a reliable marker for the 'lethal' cancers, so that medics can have more certainty in advising patients.

Brother In Arms Part Two

2009-11-13T06:43:00.000-08:00

Here's the second of the guest blogs. This one comes from Jeremy, who chose the same treatment as I've done: High Intensity Focussed Ultrasound, and with the same surgeon. He also had neo adjuvent (i.e. prior to operation) ADT (Androgen Deprivation Therapy). What's remarkable about Jeremy's story, however, is the circumstances surrounding the location of his's PCa. He was 67 when he was diagnosed in April 2009. His initial PSA was 7.8 ng/ml, his Gleason Score was 4+3=7 and he was staged T2b. This is his story.

I was fortunate. Courtesy of my employer some years ago I had gone to a BUPA health screening programme which included PSA testing. At that time my PSA was low enough not to cause concern, but high enough to encourage me to have it regularly checked thereafter. Over several years the readings remained relatively constant, but then increased from 5.2 µg/L to 7.8 µg/L over a six-month period. My consultant had been offering me the choice of a biopsy on earlier visits, but I think both of us had felt comfortable in not going along that route at that time. Obviously, the sudden increase emphasised the need for a biopsy, which took place in April 2009.

With hindsight, and with the knowledge I now have about PSA levels, I would have opted for a biopsy at least 18 months earlier. I have no doubt that I would still have had cancer, but presumably it might not have developed so far.

My consultant suggested the choice of surgery or brachytherapy. I guess it's normal practice these days, but he seemed reluctant to guide me towards a decision, other than providing some basic comparisons between the two treatments. In fact, one of the earliest comments he made was to suggest that I research on the Internet. This I duly did and decided that I really wanted to avoid surgery if at all possible, and thus opted for brachytherapy. At that time my consultant agreed that this would have been his choice if he was in my position.

To reduce the size of my prostate prior to brachytherapy I was put on 3 months of hormone treatment. I experienced a number of not very pleasant side-effects but my prostate size shrunk significantly. However, urinary flow problems still precluded brachytherapy and I was told that surgery was my only option.

During the 3 months of hormone therapy I had researched alternative treatment options. One of these was HIFU which appealed because it is minimally invasive and appeared to offer less risk of erectile dysfunction, incontinence and other associated problems than most of the other treatments.

I contacted Mr. Mark Emberton at University College Hospital in London who is probably the most experienced person in the UK with HIFU treatment. Having met with Mark, I liked him and felt confident in him, and decided that I would go ahead with HIFU.

First of all, on Mark’s recommendation I had a template guided biopsy with the aim of providing more accurate information about the extent and burden of my cancer.

The biopsy results showed that I had a reasonably heavy burden of cancer in the left-hand side of my prostate, whereas the right-hand side was clear. All well and good, except for the fact that the TRUS biopsy carried out by the NHS had shown a reasonably heavy burden of cancer on the right-hand side of my prostate and a small amount on the left. At that stage I decided to have full gland ablation because of the confusion.

I had HIFU treatment with Mark Emberton on Friday 30th October. The procedure went very smoothly. After uncertainty regarding the extent and location of PCa in my prostate, I eventually opted for hemi-ablation rather than full gland ablation. This decision was very much based on recommendation by Mark, who felt that full gland ablation was not necessary, bearing in mind the results of his template guided biopsy.

My experience with HIFU has not been one of - 'out on the quad bike the next day; peeing normally from the word go; sex like it never was before'. Alright, I'm being facetious, but occasionally I have seen comments implying that recovery from HIFU is little more than getting over a common cold. In my case anyway it hasn't been that simple but, having said that, it really hasn't been at all problematic to date.

I have a supra-pubic catheter (external pouch with direct access to the bladder) which will need to remain in place until I can demonstrate that I am able to pee freely and routinely, and that I am emptying my bladder fairly completely. I'm not sure how long that will be, but it could be several weeks more. At this stage (two weeks after HIFU treatment) I am able to pee with only a weak stream, but things are improving daily. I have recently had a standard post-HIFU MRI scan (results awaited!) and will have the first post-HIFU PSA test in three months.

New stage begins, accompanied by giggles....

2009-11-12T08:33:00.000-08:00

Well, I have just taken my first tablet in my first stage of treatment. Bicalutamide is the generic form of Casodex, which is a hormone supressant, designed to deprive the cancer tumours of any 'food'. It doesn't 'cure' cancer, but it can keep it in check - sometimes for a very long time.

In my case it's designed as a holding operation: a precaution against the little bugger getting outside the prostate (or a brake if it already has microscopically escaped). I'm a bit nervous about it, largely because of the side effects. Some men seem to get away without any effects, but there are some which aren't very pleasant - and I could be on this until the day of my HIFU treatment (probably April or May).

Still, hot flashes are somewhat better than rogue cancer cells going for a walk, so I won't complain.

But this new milestone has turned up a curious side-effect of its own. You know how some people say that you learn who your friends really are when you get a cancer diagnosis? Well, I can honestly say not one person has 'hidden' from me since I broke the news. My friends and family have been fantastic, and have my eternal gratitude.

But there's been a curious gender-based response to the news that I'm about to drastically lower my testosterone. All the men I've told have asked about side-effects in a serious, concerned kind of way. All (and I do mean all) of the females I've mentioned it to, respond with either suppressed giggles or outright guffaws. And what's the root cause of such hilarity?

Man-boobs - who'd have thought women would find that concept so funny?

Brothers In Arms Guest Blog Part One

2009-11-10T14:57:00.001-08:00

The great blessing of having this disease is the number of men you connect with, who share the same dilemma, and aspirations, though adopt different routes to reach a common goal: a cure from PCa. I hope to feature a number of personal stories here in the next few weeks, from Brother In Arms who have generously, and freely, offered to share their experiences. The first comes from John Stevens, who lives in Washington State, in the United States, but as you'll see, is temporarily resident in California. John's chosen treatment is a very new form of radiation treatment, Proton Beam Therapy. I'll leave him to give you the details - it's a little longer than normal posts, but I'm sure you'll agree it's worth reading:

When David asked if I would share my journey with prostate cancer (PCa) within the annals of his blog I was honored to do so. First of all this is a “fresh” story as I am currently going through treatment with protons in the United States. But the story itself took on a life of its own in May of 2009. Sure, I had prostate cancer at that time … I just did not know it.

When I tried to apply for a life insurance policy in May I was required to have a physical. When the results of the blood work came back, it showed I had an elevated PSA level .02 above the threshold for acceptance of my application. Evidently I would have been a risk for the insurance company and as a result I was denied the insurance policy. My first reaction was denial and I arranged for a doctor’s appointment to clear this up and prove to the insurance company I was healthy and insurable.

At this juncture I was oblivious to what the next five months would hold. I was totally ignorant about prostate cancer … in fact, I knew little about the prostate gland itself. If a picture of the male anatomy were to have been placed in front of me, I would have flunked the “Where is the prostate gland?” question. But over the following months, all of that changed. I will summarize the events under three phases: the diagnosis, the research and finally the treatment. The content of what I have to share is not intended in any way to offer medical advice since I am obviously not qualified to do so. It is simply a recounting of my personal quest to subdue and conquer the cancer in my body.

The Diagnosis

The first trip to the urologist was wrought with uncertainty. Did I have the right doctor; do I have PCa; is this life threatening; what will the rest of my life look like? These types of questions were swirling around in my head. I felt so inadequate and almost helpless with this situation. The second trip to the urologist was for the biopsy. Following the biopsy I started grasping the likelihood I had PCa and I started mentally preparing myself to hear that dreaded diagnosis. The diagnosis came a week later when we sat down with the doctor to hear the words, “You have prostate cancer.” I was hoping to hear just the opposite but deep down inside I had a premonition to the contrary. With the wind now blown out of our sails, an inner numbness set it.

What I remember hearing from the urologist was that surgery to remove the cancerous gland was his preferred treatment option. But he added, “Now is the time for you to do some research.” Besides surgery the doctor presented external beam radiation, internal radiation (brachytherapy), cryosurgery and active surveillance as viable treatment options with my staging and Gleason score.

Of all of the words tossed around in that conversation, surgery and brachytherapy were the only ones I understood. Brachytherapy was the treatment option my father had chosen about 10 years ago. Because of the doctor’s strong case for surgery we left the appointment with the assumption that this would be our treatment path.

The Research

The focus at the start was to try to build up my knowledge of PCa. I soon discovered that this was not going to be an easy task. There is not a clear cut answer to the question, “What is the best course of treatment?” Cure rates are almost identical for each option.

My wife encouraged me to call a friend of ours who recently faced and dealt with his PCa. He was full of information which laid the foundation for me in consideration of proton beam therapy (PBT). As little as I knew of PCa, I knew less about PBT.

Research can be intimidating and it may not be something you feel adequate to tackle. Even so a person still needs to become his own advocate and enlist the help of others when necessary. Multiple medical opinions from doctors and specialists are a must. Talking to others who have traveled or are currently traveling this road is key to making a decision. Finding YANA, a prostate cancer support site, was pivotal in my journey.

As I continued with my research I began delving into patient testimonials in an effort to find someone’s story similar to mine. This is the point when David’s and my stories crossed paths through YANA. However, I soon learned no two stories are alike and my PCa is unique to me. My staging, my PSA level, my age, my pre-existing conditions and my overall health are all contributing factors. As a result I became settled in the fact that the decision to treat the cancer was in my hands, not the doctors’.

The important part of this phase was creating a list presenting the pros and cons for each treatment option. My list included cure rates, the invasiveness of the treatment, quality of life issues, short and long term side effects, length of treatment, insurance coverage, and patient testimonials focused on these types of questions. This is where you take a hard look at the statistics and pore further through the testimonials. The differences between treatment options are not in survival rates or recurrence statistics, but in side effects.

At a certain point you come to the place where you find an affinity with a particular treatment option which then becomes your focus to battle your cancer. I genuinely considered surgery. It was, after all, “The Gold Standard.” However, it was not long before my focus shifted away from surgery the more I studied each option with its corresponding side effects.

The final factor was from the realm of what some would call coincidence, while others would choose the word divine providence. Mother Teresa put it this way, “When I pray, coincidences happen; and when I don’t, they stop.” The waiting list at the Proton Beam Therapy specialist centre, ( Loma Linda Medical Centre LLUMC) was quite long when I first approached them to get a consultation. I asked to be put on a waiting list in the event an opening became available. The day after a family prayer time this past August I received a call from LLUMC asking if I was available to come and fill a vacancy for a consultation. That phone call was the final piece in establishing PBT as my treatment choice and LLUMC as the treatment location.

The Treatment

Step one was the consultation with the doctor assigned to my case. This is the stage in which I was informed of the total scope of the treatment including cure rates along with a discussion of the possibility for failure of the treatment. All of this was in light of how far my cancer had progressed. I was once again assured the cancer was in its early stages and the prognosis was very good.

The present protocol calls for 45 treatments given over a period of about 9 weeks. I was also presented with the offer to take part in a trial with 20 treatments over about 4 weeks. With the former option the protons are delivered to one side (through the hip area) one day and alternated to the other side the next. The trial protocol takes in both sides the same day. I opted for the standard protocol.

The planning stage takes place the day following the consultation. The first step was to fit me for an immobilization pod and receive my first “balloon.” The pod ensures you maintain the same position for each treatment. The purpose of the “balloon” is two-fold. It inflates the area of the colon near the target area and moves it away to a safer location. It is also intended to keep the prostate gland in the same spot for each treatment. We are also instructed to drink 16 ounces of water one half hour prior to treatment as another safeguard in protecting the bladder from radiation. A full bladder helps push the bladder further away from the prostate gland. From there it was off for a CT scan to create the templates for the treatment target area. The pictures were reviewed by the proton team to create my treatment plan.

Exactly one week later on September 30, 2009 at 10:00 AM the actual treatment began. Final adjustments are made daily based upon x-ray and computer computations. The only sensation felt during the treatment is from the “balloon.” The whole experience lasts only about 10 minutes with the actual delivery of the protons taking a little over a minute and a half. There is not much to report regarding treatment other than this will be the routine until about December 4, 2009: drink my water, show up at the Level B waiting room, get changed into my oh so chic hospital gown, walk down the hall to Gantry 3, climb into my pod, receive my balloon, get two x-rays, count off 30 beeps from the Geiger counter indicating protons are being delivered, and then climb out and head back to my temporary home away from home.

This is supposed to be the time when I would say, “in conclusion …” but my journey with prostate cancer is still a work in progress. I am doing what I can to bolster my chances for a successful cure. There is not much more I can do regarding my treatment, but I can do more with my diet and lifestyle. I had considered myself to be in pretty good shape prior to my cancer diagnosis. But an added benefit from my research was discovering how much more I should be doing in establishing and maintaining good health and nutrition habits. All of these pieces are part of the program here at LLUMC. This is your invitation to actively guard your health and stay informed.

Buying Time

2009-11-05T03:06:00.000-08:00

"The Urologist tells me that a new drug is now being trialled to treat prostrate cancer and that it seems to be the breakthrough all have been waiting for I hope we don't have to wait to long for it to come on the market."

For all cancer survivors - whether they admit it or not - there is one overarching strategy behind their treatment choices: buying themselves as much time as possible. There are two underlying reasons for this. The first is the really obvious one. Life, for most of us, is good and we want as much of it as possible. The second, we don't like to talk about because it makes us appear a little, well, desperate? It's that the magic bullet, the scientific breakthrough, the miracle cure, is just around the corner. The above quote comes from a member of the excellent 'You Are Not Alone Now' forum for Prostate Cancer and, whilst we all know that these miracle cure news stories appear daily in the media, they often turn out to be false dawns. That said, I think it's probably not unreasonable these days to assume that, in 10 years time, many cancers will be the treatable conditions that we all hope to see. It's certainly what I'm banking on!

In fact, we are probably getting close to that point now. It's worth remembering that only 3% of men actually die of prostate cancer, and those figures are based upon historic records. For men diagnosed this year, mortality rates are likely to be lower still. The real breakthrough will come when there is a surefire treatment available which doesn't have the downside of pretty grim side effects. Then we won't just have more time - we'll be able to do a lot more with it.

Time To Act

2009-11-04T13:25:00.000-08:00

I got the results of the latest MRI scan, which I had at the University College Hospital in London, this week. The machine they use is state of the art, and produces very clear pictures, so it's been an important part of the diagnostic process, and produced markedly different results to the scan I had shortly after my initial diganosis (if you're reading this after a biopsy, please resist the urge to have an MRI scan until at least 6-8 have passed. The sludge from the biopsy, known as artifacts, obscures the picture).

So, I've now had the scan report and a telephone consultation with the senior researcher at UCLH. There's good news and bad. The bad is that the extent of the cancer is worse than first thought. Though still, almost certainly, within the confines of the prostate gland, it's a little too up-close-and-personal with the edge of the capsule for comfort. This alone rules out the two clinical trials in HIFU, which are being conducted at UCLH: both are adopting a 'lumpectomy' approach to PCa tumours, and wouldn't zap enough of them, to stop the disease from progressing.

The good news starts with the confirmation that I can still receive a 'whole gland' approach to HIFU - the equivalent of a mastectomy - and they've done this operation hundreds of times, with very good outcomes. The bad news is that HIFU has become so popular a choice of treatment (thanks no doubt to recent press coverage) that they have a waiting list which means I probably wouldn't be 'ablated' until May. Therefore, they've recommended that I go on to immediate hormone treatment, a daily low-dose tablet called Casodex which halts tumour growth (in some case shrinking it) until my operation. This 'holding operation' essentially blocks the testosterone upon which the tumour feeds, but carries some minor side-effects for some people, including breast tenderness, (or worse: 'man boobs'!), fatigue and the curse of the menopausal woman, hot flushes. But even here, there is good news - I won't have to shave so often, thus saving a fortune in razors and foam!

The really significant part of the MRI report, however, is this: once HIFU treatment takes out the whole gland, the potency side effects risks get much closer to other 'radical' treatments : the chances of impotence are between 30-40% apparently. These aren't great odds, but the odds of being disease-free after 80 years are about 80%.

So, I can't pretend it's been anything other than a really difficult week, and this has probably been my most difficult post to write. However, having embarked upon this blog with a commitment to be open, I can't suddenly clam up when it gets difficult and deeply personal.

In coming to this decision, I've welcomed the frankness of fellow 'Brothers-In-Arms'. They ask searching questions like, 'how long do you expect to live?', or 'how much are you prepared to risk the quality of your life for an extension to its longevity?' because they've lived through these dilemmas themselves and know there's no point in pussyfooting around. I've been so impressed with the likes of George, Ross and Jeremy from England, and Terry and John from the US and Australia, that I've asked if they'd be willing to be guest bloggers in the next few posts. These are ordinary guys whose lives have been transformed by extraordinary circumstances, and I've been inspired by their response - and I think you will be too.

I Used To Like 'Possible'.....

2009-10-30T11:22:00.000-07:00

It has always conjured up the hope of what might be. That it pays to keep an open mind - anything's possible.

Only sometimes, it's not so encouraging. I've been told today that, following my super-sharp, multi-sequence, MRI scan at UCLH, it's 'possible' that I need to be 'up-staged' (and I hate being upstaged at the best of times). It seems like my original MRI scan (done in Leeds shortly after I was first diagnosed in July) was so full of gunk floating around from the biopsy) that their staging of T2 (tumour localised within the prostate) might have been ill-informed, or at least optimistic.

My latest 'possible' staging might be T3a which, apparently means there's a visible 'irregularity' on the edge of the prostate, and 'microscopic' escape from the capsule is (again) 'possible'. This isn't the best news to hear when you've had a week with the 'flu, but it has at least developed a new sense of urgency within my deliberations. If it's still contained within the prostate - but not yet escaped - then my treatment options remain open, and the complete success rates high. But I also understand that, left alone, leakage will inevitably happen, make success rates dip slightly, so a decision is needed and action to follow soon after.

UCLH did confirm, however, that my seminal vesicles and lymph nodes are still clean as a whistle, so even if there are some microscopic rouge cells out there, hopefully my immune system is giving them the heave-ho.

My friend Jeremy is in a similar position to me, and he is at this very moment under the, er, wand - no knives used in HIFU. He has also been told of possible microscopic escape, which spurred him to a sooner rather than later decision.

So, what's the best thing to do?
1. Don't panic - it could have been like this for ages, without showing up on the earlier MRI
2. Come to a decision on a form of treatment in the next few weeks
3. Do everything you can to boost the immune system

Prof. Jane Plant has written about the consumption of phytoestrogens and their role in aptosis of cells.Time for some lignans on toast!

Celebrity Cancers

2009-10-26T15:11:00.000-07:00

I've got every sympathy with Andrew Lloyd Webber joining the group that no-one wants to be part of. The Daily Telegraph today reported that he'd gone public on his prostate cancer. It looks like he's already had a radical prostatectomy, and I wish him well for a speedy recovery. I hope he took his time over his treatment choice, but it appears to have been a fairly swift reaction. Understandably, given the emotional hold cancer has on most of us, the 'just get it out of me' route remains the most popular option, but it's by far from being the only one.

It would also be great if papers like the Telegraph would report a bit more responsibly on these celeb cancers. Many men are heavily influenced by so-called respectable papers like the Telegraph, and even more so by TV Lords of the Realm. So, it was disappointing to see the misleading assertion that one-third of men with prostate cancer will die of it in any given year - that's simply not true. The latest studies suggest that around 95% of men diagnosed in Western developed countries this year will still be alive in 15-20 years.

Nor does it help when his brother, cellist Julian Lloyd-Webber describes RP as ' a routine operation' with virtually 100% success rate'. I hope he was mis-quoted, or perhaps it's fraternal wishful thinking, but an operation with a high incidence of incontinence and impotence as side effects can never be described as 'routine'. And its success rate is all to do with the stage at which the disease is detected.

It sounds as though Andrew's PCa is at an early stage, and hopefully contained within the gland. In which case, statistically, he's probably got a 90%+ chance of disease free survival of 5-10 years by choosing RP. But he's got statistically similar chances with other newer, and less drastic forms of treatment.

When someone famous gets PCa, many men - too afraid to talk to their doctor - will read about their stories and be disproportionately influenced. All the more reason then, to present a sober and thoughtful piece of public information.

If you happen to be reading this and have just been diagnosed, don't rely on the papers, go to somewhere like YANANOW.net - hear it from people who've been there and know.

And don't panic - live strong and live well.

A Pig of an Illness

2009-10-24T05:18:00.000-07:00

I write this from my sickbed. I have just completed the online assessment, and it looks like I have the H1N1 virus (aka swine flu). The process of self-diagnosis seems to be a remarkably hit-and-miss affair. At first I thought I couldn't have it, as I don't have any fever. But then I read that lots of people have the shivers without the sweats. I have quite a few of the other symptoms, so I've been given the code to collect the Tamiflu vaccine, and will start on that tomorrow. They tell cancer patients to report to their GP, but I don't feel like my immune system is overly compromised right now, and I still don't consider myself at even moderately raised risk.

In its effects, H1N1 makes Prostate Cancer seem quite harmless. Of course, in a week's time, I probably won't have Swine Flu, but I'll still have PCa, so a bit of perspective is needed. But perspective is the first thing that goes when one gets a sudden illness (and this was really sudden). I remember John Steinbeck describing how the people of Salinas, when they were in the depths of January, always believed that winter would never end, even though they knew, logically, that spring would come around again soon. It's a bit like that when you're experiencing illness. I know that I'll be well again in a week, but it just doesn't feel like that right now.

I know, I'm just being a man - 'sic transit gloria mundi' and all that. If I needed any reminding that all things must eventually pass, I got it earlier this week, when I visited Carthage, near Tunis (it was either that or attend a discussion about whether classical music has a future - what would you choose?).

I'm sure, when the Romans built those waterworks, latrine systems, villas and amphitheaters, they must have thought they were always going to be top dogs. But their ambitions crumbled quicker than the buildings, which are still impressively preserved.

Nothing lasts forever - neither flu viruses, nor, hopefully cancerous cells. I expect to get the results of my latest MRI scan on Monday, and hopefully it will show that particular empire has not expanded!

Keeping Busy

2009-10-12T12:53:00.000-07:00

A long while back, when I thought I might have cancer (mistakenly as it turned out), a colleague I was working with had recently been given the all-clear after dealing with throat cancer. Sensing my anxiety, he told me to bury myself in work, until I knew for sure.

The fear of cancer would appear to be worse than the reality (at least if you have a prostate cancer of very limited aggression). And the fear of getting cancer took up more of my life than was good for me. People keep remarking on how positive I've seemed lately, and at least one part of my current attitude is to do with the removal of that fear - I've got it, so there's no need to be afraid of it.

We finally moved into our new house ten days ago (which explains the long gap between posts). We'd considered not completing the purchase after I got the diagnosis, but I'm really glad that was just a passing thought. Not only is it lovely to have a garden to look after again (we had an interim spell in rented accommodation), but it's been an intensely 'normalising' activity. So much so, that of late, days have gone by without me once thinking 'I've got cancer'. In the days following diagnosis that gap used to be measured in minutes.

On Friday I go to Tunis for a conference. It will be really interesting work, and I'll take the golf clubs, so that I can get some relaxation in, after a frantic few weeks. In all the hubbub, I completely forgot to pick up the results of my latest MRI scan at UCLH.

Which is a good sign, I think! (Though I will post them here when I get round to it...)

The HIFU Countdown

2009-09-26T13:57:00.000-07:00

Well, the guys at the University College London Hospitals (UCLH) have mapped out what should be my trajectory for treatment, all being well. I had my swanky MRI last week. I was in there for an hour, so my prostate pictures ought to be High Def, as opposed to the fuzzy blob I had so far. I've got some pre-assessment work toward the end of October. And then there is the giant pin-cushion on Nov 28th. This is a procedure called prostate mapping, which, as you'll understand in a minute, requires a general anesthetic.

(Squeam alert...)

Prostate mapping attempts to avoid the 'needle in a haystack' approach to conventional biopsy. In order to diagnose my PCa, I had a 12 core biopsy (that is, 12 needles, like mousetraps, going off). It sounds a lot worse than it is.

But if you picture the prostate about the same shape and construction as a walnut, then 12 tiny samples, isn't like to give you a very accurate picture of where the cancer cells reside. Prostate mapping takes more than 4 times the number of samples, and also comes at it from a different angle (the perineum, not the anus)

So, not something that you'd choose for a good night out, but if it helps give a really accurate picture of where to target the HIFU wand, then worth doing.

I heard today from a fellow journeyman who was originally told that most of his cancer was in the left side of the walnut, but following a prostate mapping biopsy, was confirmed to have most of the trouble in the right side!

These things don't matter if you're zapping the whole gland - either through surgery or brachytherapy. But those two treatments significantly lower the chances of sexual and urinary function preservation. HIFU's 'hemi-ablation' treatment, which effectively blasts one side of the walnut, but leaves the other untouched, has very few side-effects. So, it's a preferable strategy (so long as you know which side of the walnut needs cracking.....).

Hopefully, once I've had the mapping biopsy, the focus of the HIFU treatment, will be much clearer.

That said, I'll probably not get the actual treatment until February of next year, and if my diet and supplementation strategy keeps working (see my last PSA results) I still have the option of more watchful waiting.

So, on the road, but no rush to get there.

Easy As.....?

2009-09-24T15:41:00.000-07:00

OK, let me say this just once more: if you're reading this, and you're a male of 40+ years, what's your PSA score? Thought so.

Despite this being Prostate Cancer Awareness month in the US, we still have precious few men being screened, and therefore not knowing their risk of PCa. One of the reasons for this poor response (especially when compared with breast screening) is the (relatively) intrusive nature of testing for potential cancer of the prostate. Comedians like Billy Connolly have got 20 minutes material out of the 'digital rectal examination' (stop it, it's nothing) but, inadvertently, have also helped to put off many from having it done.

Well it looks like they're not going to have that excuse much longer.

In a recent report in Cancer Research Journal, very promising results have been seen in a simple urine analysis test for PCa 'biomarkers'. Even more encouraging, the test appears to be more accurately predictive of the likelihood of cancer, than the tradition PSA blood test.

This still won't avoid the 'prostate screening leads to over treatment' argument, though I confess I just don't get this debate. The undoubted overtreatment of prostate cancer, isn't because we know many more men have it - it's source lies, partly, I believe, in many men becoming freaked out at the thought of 'it' being in them. The likelihood is for many men is that 'it' would never become life-threatening, but just knowing it's there, together with the crudeness of 'radical' interventions, means too many men opt for radical treatment unnecessarily. But that still doesn't mean that 'knowing' is a bad thing.

Hopefully, the imminent urine test will encourage more men to be screened. In the meantime, lads, just get over yourselves, and have the PSA and the DRE!

Surgeon as Human

2009-09-18T15:34:00.000-07:00

I met with the top Brachytherapy man at St James Oncology Institute in Leeds today, Mr Bottomley. What a lovely bloke..... It's people like Mr Bottomley who restore your faith in surgeons. Considerate, kind, and a genuinely sympathetic manner.

He wasn't even perturbed when I told him that I was hoping to opt for HIFU as my preferred treatment: 'It could well be that in 10 years time we'll see HIFU as the standard form of treatment' was his response. He was also impressed that my PSA had fallen, and admitted that, generally, urologists over-treat PCa, so that watchful waiting is still a genuine option for me.

Of course, brachtherapy is a highly-effective prostate cancer treatment, and would be my second choice at this point.

Not least because of the phenomenal results of the team at St James - certainly the best in the UK, and possibly in Europe. I'm very lucky to have such expertise on my doorstep, and free at the point of delivery.

Going Down.....

2009-09-18T01:39:00.000-07:00

One of the things that lurks in the back of your mind, in that limbo between diagnosis and treatment, is the question of how fast you need to act. Various people have said to me 'don't leave it too late/get treated as soon as possible/ it might spread quickly if you don't act now' but I refuse to be panicked into going for radical treatments without being in full possession of the facts.

If I'm to go for HIFU, I don't have much choice really. The team in London are swamped and they have some diagnostics that are necessary - not least because the team there cast doubt on the conventional biopsy first, then MRI, route. We also have a bizarre NHS protocol which (for all the right reasons) tries to get people to treatment within a month from diagnosis, so hospitals occasionally recommend making up your mind quickly. (For our US readers, don't believe the Fox News version of our National Health Service - it really is pretty good!)

Shortly after diagnosis, I had lots of those middle-of-the-night-doubts and wondered if I was doing the right thing in waiting. So, I decided to try to do everything I could to slow down tumour growth. I'm eating a dairy-free diet (a la Prof Jane Plant's recommendation); I'm exercising regularly, and I take PCa-targeted supplements. In case other PCa patients are interested, they are: Vitamin D, Turmeric (although I cook turmeric potatoes regularly too), Quercertin and DIM (Dindolylmethane).

Now, I make no claims whatsoever for their efficacy, but I just got the results of my last PSA test: 3.7. This is markedly down on my March test (4.1), and the lowest it's been since I started having it tested 3 years ago!

Does this mean the cancer is shrinking? Most probably not. PSA testing is notoriously unreliable, so I'm not getting carried away. But it does suggest there's no bush fire raging down below, and that I have no need to panic if I can't get HIFU'd until the New Year.

We'll get a better idea next week, when I have a super high-def MRI scan at UCLH.

Live well.

Natural Born Killers?

2009-09-16T14:48:00.000-07:00

There's been a flurry of interest recently in the media over some promising research findings, over the gene E4bp4. This gene apparently is the thing that turns your white cells into lean, mean killing machines - at least when it comes to cancer, that is. You'll see from my earlier post, that there's a widely held view that cancer mutations are happening all the time, but an effective auto-immune system has armies of Natural Killer (NK) cells, zapping mutations before they can get a foothold and become tumours.

It's possible that here's an explanation why some people don't get cancer at all, or do get it, but cure themselves 'naturally'. The theory would suggest that those whose immune systems are suppressed are not churning out the NK cells, and are then likely be diagnosed at some point with cancer.

As ever more research is needed but, potentially, the E4bp4 gene could 'switch on' non-killer cells and provide a future cure/preventative for some cancers.

All in the Mind - Part Two

2009-09-14T14:49:00.000-07:00

Another day, another cancer headline. Strong evidence has emerged that depressed people are more likely to die of cancer - 39% more likely. Now, at first sight, those who belong to the PMA club (Positive Mental Attitude) are likely to be laughing all the way to the Oncology Unit. This one appears to come from the University of the Bleeding Obvious, does it not?

Well, not necessarily. Many surgeons, MDs and oncologists will tell you that there's no proven connection between mindset and survival chances. Further yet, they often criticise alternative or complementary treatments as being the stuff of quackery, and offering patients the 'false hope', that through non-surgical or non-medicinal means they can significantly improve their health and impede their tumour growth.

This latest research would suggest that believing in an optimistic - even unfounded - prognosis could help a patient's chances of survival - or at the very least do no harm. To that extent, in my opinion, there's no such thing as 'false hope', and doctors should be disciplined for using that phrase.

Many of us who have been diagnosed appear to intuitively know that there's a lot one can do for one's physical health by improving one's mental health, but the medics (with some notable exceptions) seem stubbornly slow to acknowledge what we know to be true.

I guess that's why we're called 'patient's.

Cancer's A Word, Not a Sentence

2009-09-10T11:48:00.000-07:00

It's been a time to meet up with colleagues, acquaintances and friends after the summer break. Lots of people showing great concern and asking 'How are You?' I tell them I'm absolutely fine, but I can tell they think I'm putting on my 'brave face'.

But I am fine. No symptoms, my diet is good, I'm exercising lots and the meditation and a more balanced outlook has lowered my stress levels still further. More than anything, though, I realised this morning that I've had a weight lifted off my shoulders. For reasons I explained in an earlier post, I've had a long-held and morbid fear of getting cancer. Well, no need to be afraid anymore, or indeed in the future.

I will continue to visualise myself making a full recovery, although one possible HIFU treatment may leave a 'spot or two' of cancer, and I'm pretty confident I could live with that. So, long may this lightness last - and if you happen to see me, believe me, I'm living very well indeed!!

Do you need an excuse?

2009-09-08T15:15:00.000-07:00

To feature a man who epitomises soul?

I know it's off-topic, but there's nothing better for the spirit than a regular injection of Bobby McFerrin. If you're in a hurry, just skip to 4:50 ish of this video - this is the kind of tranquility, balance and poise that I aspire to (but come nowhere near) when faced with major life challenges!

Trust me, never let a month go by without a bit of Bobby....

Can you catch prostate cancer?

2009-09-08T14:43:00.000-07:00

An interesting article appeared in this morning's Daily Mail tabloid. Now, UK readers will already know that the Daily Mail finds a 'cure' for some form of cancer at least twice a week, so this all has to be taken with a large dollop of salt.

But the piece speculated that a large proportion of men with the aggressive form of PCa were also found to have the xenotropic murine leukaemia virus (XMRV). It is further speculate that XMRV could be sexually transmitted - with the possibility of links to the cervical cancer virus, human papilthatloma virus (HPV).

This raises the possibility of a vaccine against PCa, encouraging hopes that the mortality rate (most of the deaths caused through PCa originate in those with the most aggressive forms) could be dramatically cut.

It's easy to get hopes raised, but the big question is whether the virus is a cause of PCa or something which accompanies the disease. It seems reasonable, however, to postulate that, with so many of the more aggressive tumours being accompanied by XMRV, that there is a causal link. Only further research will show but it gives further hope that, one day this will be a treatable, if not preventable, diease. It also suggest that, with research findings emerging daily from around the globe, that the first priority for a prostate cancer patient is to buy time with their choice of treatment.

All In The Mind?

2009-09-06T16:13:00.001-07:00

Since I'm almost at the point where my decision on treatment is made, I think this blog might take a more philosophical direction for a while. Apologies if this becomes a bit more personal than you'd like it to be - and please tell me if that's the case - but it helps me make sense of things.

Take the question of the mind and body connection. I've been reading some books lately which present compelling, if largely anecdotal, evidence that our mental health is inextricably linked to our physical well-being. Many medical specialists would suggest that this is unproven nonsense, but ultimately, we are persuaded as much by the things which happen in our lives as the evidence we read and hear about.

I have always had anxieties about getting cancer, ever since my mother died of metastatic breast cancer when I was 21. I remember once confiding this anxiety to my GP, and she said 'Well, if you become too anxious about it, it's more than likely to happen'. Whilst I don't think you can scare yourself into getting cancer, there are a sizeable number of MDs who believe that cancer cells are being produced all the time, but a healthy immune system kills them off before they can get together for party. It's fairly well accepted that stress compromises the immune system, so it's not unreasonable to imagine that a poorly functioning immune system might miss some of the cancer cells not on the guest list, thus allowing a malignancy to form.

And it's not just cancer of course - at the last significant period of stress in my life (around ten years ago) my personal and work circumstances were such that I suffered a range of one-off health issues: migraine, shingles and palpitations, to name but three. A couple of years later and I suffered the first of my atrial fibrillation attacks, which have waxed and waned since then ( I later found out that the underlying cause for this was a genetic heart condition, thankfully minor in my case).

For a long time I didn't deal with the stress and the afib got worse. Who knows, perhaps this is when the PCa started, ever so slowly (it is a remarkably slow growing cancer). Eventually, I realised that I had to make some serious life changes: I quit my job, went freelance, started meditating, looked into nutrition, and began seriously addressing the personal issues.

Over the past few years I've turned the frequency of my afib attacks around, through an assiduous focus upon lowering my stress levels, proper diet and nutrition. This would seem to suggest, to me at least, that stress-induced diseases can be partly reversed, by a determined effort to reverse stress itself - at least this is the view held by mind-body believers.

There have been any number of cases of terminal cancer being halted without any other intervention other than faith/positive thinking/meditation or some other powerful cognitive intervention. I'm decidedly not in the camp that would refuse treatment in favour of 'holistic' approaches. But I do think that I'd be foolish to ignore the lessons (literally) of my heart, and so I'll be continuing to experiment with positive visualisation techniques, renew my efforts in meditation, eat well and add appropriate dietary supplements, in an effort to give the conventional treatment every possible chance of success.

At the very least, it can't do any harm, can it?

Going Properly Public

2009-09-04T15:04:00.000-07:00

Well, I did it. Having vowed to keep my work concerns separate from my health concerns, I found myself today, giving a speech to a large number of (predominantly male of advanced years) music teachers in sunny (ha!) Blackpool, England.

Given that one has been hired to talk about Music Education, it's a big leap to get into prostate cancer, but I just felt I should raise some awareness of PC Week in the US, and to remind the over-40s of the benefits of PSA testing. The last thing I want to do is to come across as some sort of Jeremiah, but I only briefly (2 mins max) alluded to PCa and reminded people that, if caught quickly enough, it is a treatable condition.

Will have to see what the reaction was, but, judging by the people who came up to me afterwards, I think it was appreciated - particularly for those who didn't even know they had a prostate!

Getting Closer To A Decision

2009-09-01T12:30:00.000-07:00

Sorry for the delay in further posting. I've been ploughing through the post-vacation of things to do. Among them are more consultations. I'll be having a meeting with the Leeds top-man in Brachytherapy on Sept 18th, and then going to University College Hospital on Sept 22nd for a multi-sequence MRI and probably what's known as a 'template biopsy'. The latter takes 50 core samples, so I'll have a pincushion for a prostate afterwards, but at least we'll know a) a very accurate picture of the extent of the cancer; b) if I'm eligible for the HIFU treatment.

So, I can anticipate a final decision on treatment by the end of September and, ideally, treatment (both current options are one-off procedures) in the middle of November.

This means that I'm doing a lot less research, and a lot more preparation both mental and physical to give the treatment the best possible chance of success. I've been ordering books by people who've survived stages of cancer far worse than mine (Michael Gearing Tosh's 'Living Proof is a pretty inspiring read in this respect). I'm also on a very good diet and taking a range of prostate specific supplements, and exercising. I will add to this, meditation and visualisation. I aim to be one of what surgeon Bernie Siegel in his excellent 'Love, Medicine and Miracles' describes as 'exceptional cancer patients' (about 20% of the patients he typically sees). Such patients question relentlessly, seek multiple opinions and need to have an 'inner locus of control'. Perhaps unsurprisingly, patients who are positive (and outspoken) about their illness have much better outcomes, so it makes sense - though I'm aware that it's not always easy to be so, especially when the prognosis isn't good.

But I'm hoping that these four strategies - diet, supplementation, exercise and visualisation/meditation will get me ready for treatment, and what comes after it.

A Different World

2009-08-20T07:45:00.000-07:00

A couple of days ago we were driving around Italy, and came across a place all too familiar to me, though I'd never been there, and had no idea where it was. Montecatini was where my Dad fought in the one second world war experience he ever talked about. The allied forces took 3 weeks to capture a hilltop, and I can only imagine the horrors he saw.

Dad and I had many things in common: a passion for sport; an hereditary heart condition -a potentially life-threatening one at that - but since neither of us knew we had it, both pushed ourselves physically throughout our sporting youth, without any ill effects. It was only later in life that he suffered a number of strokes, which were a direct result of his condition (undetected almost till the day he died). He quite possibly also had prostate cancer (most men in their mid-80s have it, it's estimated) but he certainly never died of it.

It's a different world now, and there's so much more that one can do, and so much more information available, in order to improve own health, that Dad never had access to. There are also so many more medical advances which have transformed how we view our lifespan, and its quality.

The one thing Dad and I didn't have in common was the horrific war experiences that he suffered as a frightened seventeen year-old in Italy. It's possible that he resolved then that if he ever got through it, he would live his life to the full, positively and well. It's another thing I hope I've inherited from him.

We've now moved on to Innsbruck where the scenery is spectacular. We're heading out on the bikes soon, and we'll have a great meal overlooking a beautiful mountain. I'll remember to make a toast to the different world we now live in.

Live well!

Vitamin D

2009-08-16T06:30:00.001-07:00

There's quite a weight of evidence that vitamin D has strong anti-cancer properties. It can, apparently, both help prevent, and overcome, Prostate Cancer, among others. Vitamin D is most commonly found in sunshine, and cancer incidence maps of the world do show marked differences the further you get from the equator. Certainly, the weather in Northern England has been pretty lousy for the past few years. I had my Vit D levels tested a while back and I'm well under the recommended limits.

So, hopefully, supplementation and this week's holiday will help reverse that pattern - I write this from Grado, Italy, where it's about 32 degrees and unbroken sunshine.

Scorchio!

A Fellow Journeyman Writes......

2009-08-13T14:52:00.000-07:00

Jeff Jarvis, author of ‘What Would Google Do’, and recently diagnosed with PCa is going to be regularly reporting on his journey through the disease in the Guardian. His first post was this week, and you can read it on his blog here.
Jeff has very different circumstances to mine, and he’s opting for a different solution too, but we clearly share the same belief in being open about this condition, in order to scale-down the fear factor.
He, being a pukka author however, writes far better than I. Nevertheless, in a quick email exchange, we agreed to follow each other’s progress. He’ll be under the robotic knife in September, and I wish him all the best. The primary treatments largely share the same positive prognosis for locally confined PCa, so the gamble we all take is on the side effects and, as all the forums state, the choice you make will be the right one for you.

The Male Lumpectomy?

2009-08-13T14:50:00.000-07:00

This week, I had my consultation with the person who is known as ‘the man’ of High Intensity Focussed Ultrasound (HIFU): Mark Emberton of University College London Hospitals. I’ve described HIFU in earlier posts, but suffice to say here that it’s been described as the male equivalent of the breast cancer lumpectomy (and the connections between prostate and breast cancers are well known). Ten years ago, the standard course of treatment for breast cancer was mastectomy, but now the approach is invariably to only remove the cancerous part, through a lumpectomy.

The so-called ‘gold standard’ treatment for localised PCa is a prostatectomy, where the entire prostate is removed – even though many men have relatively low levels of cancerous tissue (in my case an estimated 13%). HIFU at UCLH has, essentially four levels of ‘removal’, though nothing is actually removed, since HIFU works on blasting the cancerous cells with sound waves. The principle is that only the cancer should be treated, not the whole gland.
The really pertinent point is that the likelihood of side effects is in direct proportion to the amount of the prostate being treated – so there are obvious advantages of a more conservative approach. But what if some of the cancer remains after treatment?
This seems, to me, to be HIFU’s great strength – you can go back in and clean up what you missed first time. This isn’t possible with surgery or brachytherapy, where other ‘salvage’ procedures (very often HIFU) are then considered. In fact, UCLH will consider up to two repeat treatments, should there be any remaining cancer.

But the main reason why I’m going to be going back there in six week’s time, is that the team insist upon a high-resolution MRI scan followed by a ‘template biopsy’ before determining what, if any, intervention should be made. The MRI is far clearer than most hospitals, but it’s also the order in which it happens that is important: having a biopsy, followed by an MRI (as happens in most hospitals, including mine at Leeds) creates ‘biopsy artefacts’, microscopic bits of tissue that obscure the picture captured in the MRI scan. Having a template biopsy – though it involves general anaesthetic - takes 50 core samples, as opposed to the more usual 12. At the very least, we’ll have a far more accurate picture, and I won’t be as confused as I have been thus far. My home hospital has been reluctant to carry out a second opinion on my biopsy, despite the fact that prostate biopsies are consider the most difficult to interpret. So, this will proved the second opinion that most books recommend you seek, and I’d urge any PCa patients reading this to push for one.

Following that, I’m 90% sure that I’ll be opting for one of the four possible HIFU treatments. I’m aware that the long-term ‘disease free’ stats can’t be verified, yet. But then, the long-term disease free stats weren’t available for lumpectomies either when they were first introduced!

Getting to the Bottom of Things

2009-08-08T01:23:00.001-07:00

Good news folks, I don't have cancer!

No, not that one, I still have that one. But after a sigmoidoscopy this week (squeamer alert) my GPs concerns about a possible double whammy (Prostate and Colon Cancer) are allayed. The story began at the end of April when I got food poisoning on a trip to London. Persistent diarrhea followed throughout May, June and July and eventually I thought I'd better get it checked out. I have a tendency to connect everything (ideas, work colleagues, but especially aches and pains). In my defence, apparently it's very common for people with a cancer diagnosis to look for it to show up elsewhere.

Anyway, I find myself having an enema (don't say I didn't warn you....) and then getting a camera up where it's always dark, but only for the first couple of feet! I was watching the inside of my bowel on the screen when I heard the doctor say 'I'm just going to take a biopsy' - the nurse must have seen my reaction (which, incidentally, was 'here we go again') and promptly stood in front of the screen, asking me where I was going for my holidays! This was a touch unecessary, I thought, as by then I was wondering if there were any other channels on the TV worth watching.

It was all over in 10 minutes, and completely painless, just a touch uncomfortable. They were about to let me go, when I insisted on getting some feedback. 'Doctor', says kindly nurse, 'is there anything you can tell this gentleman?' (OK, doc, give it to me straight.........) 'All clear', says taciturn doc. 'Oh', say I, trying not to sound too excited, 'so why did you take a biopsy?' 'Just so we can work out what's wrong, but from what you've said, it sounds like IBS'.

And indeed it does, for apparently it's quite common to get IBS after a bout of gastroenteritis. I don't know how long it's going to last, but it's undoubtedly been accentuated by recent stress. I'll see a specialist when I get back from the imminent holiday, so we can get it sorted.

But, in the meantime, a big thank you to the 'chef' in the pub in Bayswater who didn't cook the chicken properly, back in April. You are blissfully ignorant of the impact of your culinary skills, sir, and I hope you are not similarly affected on your travels.

Meanwhile, back in the strange place, we're visiting the country's leading expert in HIFU treatment in London on Tuesday, after which, hopefully, a decision can be made. After a much anticipated, relaxing, two-week tour of 8 European countries.

I've cycled or golfed every day for the past two weeks. I feel quite fit and healthy for a cancer victim!

Confused of Leeds...

2009-07-30T02:51:00.000-07:00

Well, I had my 2nd consultation at St James this week. This time I saw the oncologist (previous visit was with the urologist). I'd been warned that, typically, uro's recommend surgery; oncos prefer radiotherapy. That wasn't the case. Both were very even-handed and reinforced the need for the patient to determine best course of treatment.

But that's where it becomes difficult. I presumed, in my innocence, that the more information I got, the more clear would be the diagnosis & prognosis. Wrong.

Uro tells me that there's definitely no 'extra-capsular spread' (the cancer is localised within the prostate); Onco says can't be certain - there could be microscopic 'leakage' - here, he says, look at the MRI for yourself. All I can see is what looks like a fuzzy circle, but with a well defined circle around it. So, then he complete a nomogram (a computer program which crunches thousands of previous cases, and estimates various probabilities. According to my numbers, there's a 29% chance of extra-capsular spread. This matters quite a bit, because some treatments only work inside the capsule - others that work outside the capsule carry additional side effects. He says that he doesn't think there's any need for twin approaches (radiating inside and outside) - presumably because nomograms are notoriously unreliable.

And here's at least one reason why: I discover when I get the nomogram home, that he has 'staged' me as T2a; Uro staged me as T2c - so garbage in, garbage out. There's a living saint down in Australia who runs a support forum for PCa patients and this was his commentary on the above:
If you had a negative DRE (Digital Rectal Examination) you would have been clinically staged as T1c (see definitions in STAGING. But the doctor felt a nodule, which would have raised your staging to a clinical staging of T2a (because he only felt something on one quadrant of the gland). The subsequent biopsy showed some positive material in both sides of the gland and this then gives a pathological staging of T2c. I have emphasized the difference between clinical and pathological staging because most of the nomograms I have seen are based on clinical staging. Now the question is – since the nodule identified on DRE was benign, should the clinical staging revert to T1c? As a perennial optimist, I’d say Yes, but there are certainly other, valid views. If you enter T1c into the Salon-Kettering Nomogram, the probability of extracapsular extension drops to 19%. On the other hand, the Partin Tables show a range of 26% - 33% for T1c and 26% - 33% for T2c. No doubt there are other tools that could be used, all of which would show differing results.

The really funny part about all this, is that I actually understand all of the above!!

Well, at least I thought I'd get to see my tumour on-screen. Actually, I don't. 'It's not visible - MRIs aren't really much good for that', says Onco. Yet Uro said it was 'clearly visible' (though he didn't show me it).

So, we're the ones who have to make the decision on treatment, but based on pretty unreliable data. Oh well, stay positive. They both confirm that there's no need to rush into a decision, and the prognosis - whatever my choice becomes - is very good. Even the bloody nomogram puts a complete 'cure' (10 years cancer free) as 87% or better.

All the same, I'm having a second opinion, and discussing HIFU as a possibility, on Aug 12th with Mark Emberton in University College London Hospital. Mark is known through the forums as the man. So, maybe he can provide some clarity!

Live well, live strong.

Long Hard Climb?

2009-07-25T08:01:00.000-07:00

(You might want to click on the video to get the formatting right)
If ever I needed both inspiration and a sense of perspective, I couldn't do better than this...... (apart from Lance Armstrong , making it to the podium in Paris, that is!)

Support When You Need It

2009-07-23T13:06:00.000-07:00

Having now got a sense of how many people are actually following these reports that I'm putting up, I need to say a big thanks. And thanks for all the messages, phone calls and emails of support that I've been getting. It means a great deal. I think you can also leave comments on this direct without necessarily having to send me an email - but I'd understand it if you'd rather do it that way.

And since there's a lot more interest in this subject than I thought, let me just post a clip of the treatment that I'm currently investigating. It looks promising, but it's only available through a clinical trial, so I'd have to hope that I can get on one!

Why Do We Get Cancer?

2009-07-23T04:39:00.000-07:00

One of the things that's been absent in my journey so far (to my surprise, I have to say) is the whole 'why me?' thing. Those who know me, know that I've taken pretty good care of myself, eat right, exercise regularly. Recently I was at a BBQ and there were so many 'can't eats' on display (bread, red meat - especially burned red meat - dairy) that I almost thought 'why me?'. I've made pretty radical shifts in my diet over recent years, as I've become more concerned about avoiding serious health issues - like cancer and heart problems. I did find it ironic that everyone was tucking in to these forbidden foods, and I was possibly the only one in the room who had cancer (or at least knew I had)!

In truth, my cancer has probably been growing for 10-15 years, so changing my diet a few years ago wouldn't have prevented it, because it was already too late. So, no 'why me?', but since my diagnosis I've been looking at why anyone gets cancer. Over the years you hear about patterns of distribution connected to geography (people in sunny climates have much lower cancer incidence than those, like me, living in grey, dull, Northerly climates) or lifestyle (smoking and lung cancer, for example). Most of the time the explanations are too technical for me to understand much. However, I recently came across this video from University of California which seems to make a lot of sense, and is described in relatively simple language. I'd urge you to watch it.

Coincidentally, I got an email today from Hopkins Johns hospital in the US (one of the world's best research institutes) highlighting the potential link between Vitamin D3 and cancer. So, I think there is likely to be something in this. In my case, it's too late to prevent cancer formation, but the video presents a strong case for slowing down the spread (and possibly reversing it) through increasing my vitamin D intake. Anyone reading this in England will know we don't get anywhere near enough Vit D through sunlight alone! So, I've done a blood test through this coalition group of scientists researching this, and I'd guess I'm in the 50%+ group who are D deficient. If so, I'm going to add Vit D3 supplements to my supplement regime.

Live Well!

When Numbers Get Serious

2009-07-21T06:06:00.001-07:00

Had my meeting with the urologist today at the excellent St James Hospital in Leeds. Got the full analysis based upon all tests carried out so far. Numbers, for PCa patients are, very signficant, not just for informing decisions regarding treatment, but also after treatment, when the quarterly checks determine whether you're still clear or not.

For those who might be interested, here are mine:
PSA upon diagnosis = 4.1
Biopsy: cancer detected in 8 out of 12 cores; volume of cancer per lobe - highest left = 30%; highest right = 20%; average volume =13%. Described as 'significant'.

Gleason score = 3+4 = 7

MRI showed NO spread outside prostate (hurrah!); only one tumour visible (in left lobe), but since cancer is present on both sides, I was given a T2c staging. This means that all treatment options are available to me (which isn't the case if there is 'spread').

So, more encouraging news, at last. We'd prepared ourselves for the worst, but with my numbers, I'd have been bloody unlucky to have seen extra-capsule spread.

We spent more time talking about treatment options, and there are 3 factors, it seems to me, which should inform a decision: its effectiveness in getting rid of the cancer; its likelihood of side effects (morbidity) and the the psychological element. So, for me, active surveillance scores low; high and low. Doing nothing is generally useless at getting rid of the cancer (although I'd not be doing nothing, as I've made significant diet and lifestyle changes); doing nothing is very good on side effects however - none seen, apart from psychological. For me, I think I'd have to feel I was taking a little more action, and being young (for a PCa patent at least) I'd be worried about longer term implications. So, I probably won't be opting for active surveillance.

I'll now investigate all options, and only make a decision when I know I can do so without feeling I need to know more, and can do so without having any future regrets. By completing an online 'nomogram', we were able to crunch the numbers. Based upon this data, if I followed a surgery route (they can do laproscopic surgery here) I'd have 91% chance of complete 'cure'; if I followed Brachtherapy (implanting radioactive seeds in the prostate), my chances are 87%. Actually, 'cure' is a misleading term - they never like to talk about curing, but 10 years of no detectable cancer is considered a cure.

I think a small libation by way of celebration.

Brothers in Arms

2009-07-19T15:02:00.000-07:00

Met up with a fellow traveller on Saturday. Over a couple of drinks we shared our numbers. He has very similar stats to me, but is a few weeks further along the road, so knows his 'staging' (T2 - confined within the prostate). Like me, he's taken responsibility ofr his own case and is doing even more research than I.

Very helpful to helpful to know that you're not alone, and that there's also no need to rush into decisions.

Take Inspiration Where You Can Find It

2009-07-17T03:21:00.000-07:00

Just got in from a 6-mile mountain bike ride in lashing rain. Soaked to the skin, but it's the first time I've been on the bike since I got my diagnosis, and it felt great to be exercising again. I had to get off my arse though. I've been reading Lance Armstrong's autobiography - you don't have to be a cancer patient to get inspiration from it! It's brilliantly written and just makes you want to get active, eat well, and be optimistic. He could yet do something amazing on the Tour de France.

Pros and Cons of Screening

2009-07-14T14:26:00.000-07:00

The one thing you realise, once you've joined the club nobody wants to be in, is that the debate around whether men should be offered routine screening for prostate cancer is essentially pointless. Everyone I have communicated with in the past few weeks who has PCa, is in favour of screening in the same way women are now routinely screened.

Ah, goes the counter-argument, but that can lead to men getting treatment who wouldn't actually need it: and the facts do show that many men would die of something else. But this disregards the matter of choice. Once you know, you can make up your mind, (and we are capable of doing that) whether to act now, or adopt 'active surveillance'. If screening isn't routine - and I've now come across enough men who were diagnosed in their forties to suggest that's turning forty is a pretty good starting point - then the choice may well be taken out of your hands.

If keeping this journal means that just one man reading this decides to get screened (and it's nothing more than a needle prick and a finger up the bum, so stop being a wuss) then it'll have been worth doing.

Please leave comments if you agree/disagree, but remember that, if you haven't been diagnosed, cancer victims automatically occupy the sympathetic high ground!

Livewell & Livestrong.

Thank God for Joni

2009-07-13T14:00:00.000-07:00

Had my MRI scan today. This will, hopefully, give us an accurate picture of level of containment of the cancer. 30 minutes in what looked like a brand new machine. If you've never been in one before, there's nothing to be overly concerned about - though I wouldn't like to suffer from claustrophobia in one. They let you bring your own CD in to ofset the very noisy sound of the scanner. So, I had a Desert Island Discs moment - what's going to be the most relaxing, yet engrossing piece I could bring? In the event, I opted for Joni Mitchell's 'Travelogue' album, and just concentrated hard on breathing deeply and trying to understand the harmonies. Must have worked well, as I think I drifted off a couple of times.......

Felt very positive afterwards, as I realised this was the first step toward recovery. Just one more week of waiting for results, before I see the specialists at St James Hospital in Leeds. Their Cancer Institute is one of the newest and best in the country, so I'm confident I'll be in good hands.

The Story Starts Here

2009-07-05T13:34:00.000-07:00

I'm keeping this online journal because many friends and colleagues have asked to be kept abreast of my engagement (I'm not going to call it a 'battle') with prostate cancer. Rather than e-mailing everyone, I thought I'd put it up here, and then people can choose to follow it, or not.

I make no excuses for relentlessly emphasising the need for men above the age of 40 to be regularly tested, and if this journal provokes one of you out there to check themselves out, then it's worth doing.

So, 16th June 2009: Following a visit to my GP, I am in St James Hospital, Leeds for a biopsy, due to: a) a slightly elevated PSA and b) a routine DRE. Now, PSA stands for Prostate Specific Antigen, and is generally considered the best - if somewhat erratic - predictor of likelihood of PCa. A DRE stands for Digital Rectal Examination, so stop right there squeamish men - if women can have smears, men can have an annual finger!

Anyway, the biopsy itself is painless. No worse than going to the dentist. So, don't be put off.

Two weeks later, June 30th, I'm waiting to hear the results of the biopsy. A researcher asks me to fill in a form while I'm waiting to be seen. The introductory blurb tells me that I have an option to choose surgery, or brachytherapy (more of which later). So, filling in a form is not the best way to find out you have cancer, but never mind.

The numbers are what you look for when it comes to the biopsy results. I'm told that I have cancer in both lobes of the prostate (I know, I didn't know it had lobes either). The grading is according to a scale known as the Gleason. Mine is 3+4 (7). The numbers refers to a scale from 1-5, where 1 is 'are you kidding me? Get on with your life' and 5 used to be (but no longer is) alarm bells and serious faces. The first number is the predominant cancer cells, the second refers to the less obvious. So, 3+4 is better than 4+3. Mine is described, therefore, as moderate/low aggression.

But the really important facet is what's known as the 'staging', that is how far it has spread. And I won't know that until I have the MRI scan on June 13th, and then the meeting with the oncologist and urologist on July 21st.

In the 4 weeks since my intial referral, I've done tons of research, and I feel like I'm reasonably well equipped to begin the process of judging which treatment might best fit my circumstances. Believe me, there are many, many options these days when it comes to treatment!