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BRONZE

David Collins and Lynne live in England -Northants. He was 64 when he was diagnosed in late September, 2007. His initial PSA was 62.3 ng/ml, his Gleason Score was 9 and he was staged T3 - having persuaded the doctors he was not T4. His choice of treatment was ADT (Androgen Deprivation Therapy) + EBRT (External Beam Radiation Treatment). Here is his story.

It started with Erectile Dysfunction. I had some night-time loo visits - only once a night at first, which I put down to old man's bladder, quite normal, nothing to worry about. It got worse, up to three or four times a night at diagnosis. It seemed to be commonplace amongst my cronies. My ED I put down to side effects of drugs for hypertension, but coming off bendroflumethiazide first (and giving it three months to work - no effect) then amlodipine (after a couple of months still no effect on the ED) leaving me on Ramipril only, I realised that probably I had a prostate problem.

My GP had stopped annual PSA tests a few years back because of the reputation the test had for false negatives and positives. (How I wish I'd known what I know now and resisted this!) My GP arranged a blood test for PSA which came back with 62.3. I was shunted off to the Urology Dept at Coventry pdq for the dreaded finger test followed by a biopsy, MRI scan and full body bone scan. Biopsy (which wasn't very pleasant at first - the Urologist didn't use enough anaesthetic and I nearly hit the ceiling). Result - seven out of eight samples cancerous, 60% level, Gleason 9 - pretty dire. I became a bit depressed. BUT, later, after arguing with the so-called experts, (who place too much credence on the Partin tables in my view), I got them to agree that based on the scans and what I knew of my sports injuries over the years, which they knew nothing about - didn't even ask - there was no evidence of metastases and actually no evidence of spread beyond the prostate - pretty good . So I was given the RT I wanted. Depression lifted, hope renewed.

I've since had a month of Cyproterone and after a fortnight of that three quarterly doses of Zoladex. My PSA went from 62.3 in Sept 07 to 5.6 in Dec 07 to 1.1 in Feb 08. Another is due any time now which I guess will show a further reduction.

I have a couple of EBRT (conformational, 20 fractions) sessions to go and apart from my night time peeing which had stopped with the Zoladex but which had gone up to once a night once the radiation therapy started (now gone), and a small amount of mucus with my motions after about 7 or 8 days of treatment, which an Imodium tablet a day for four days fixed, I have been completely clear of side effects. I feel sure that I shall not be getting up in the night at all after the next two RT sessions. In fact we're off immediately afterwards for 10 days of canal cruising, so certain am I. Also I can last all afternoon after a pint at lunchtime, which I could never have done before the EBRT. I should also mention that before the hormone or radiation treatment started, I was bit uncomfortable sitting for long on a hard surface, only too aware of an internal lump somewhere between my legs. That too has gone, so I think the two treatments have achieved considerable shrinkage of the prostate, which the Clinical Oncologist (yes, he too had given me the one finger test) had described rather unkindly as "massive".

Now, I'm a big fit bloke - not fat - but the Zoladex had pushed my weight up to 17 st 5 lbs, gathering around the hips. Its been a battle but I'm down to 16 st 11 lbs (235 lbs US). If I get below 16 st 7 lbs I shall have neutralised the treatment weight gain and some, and if I can make 16 st dead I shall be deliriously pleased as I don't think I've been there for most of my 36 years of married life, even in my cricket and hockey playing years. So I say that Zoladex doesn't have to force one's weight up.

I'm on daily Pomegranate juice (200 ml) which may prove to offer no benefits for post treatment survival after more rigorous testing, but I like it anyway and with the antioxidants it offers and the increased uptake of tomatoes I've achieved, I doing my best to help diet-wise. And yes, red wine, a glass a day as a pre-prandial then share the rest of the bottle with my wife over dinner. Good balanced diet otherwise. I can't say which of the treatments (I'm on Ramipril still and back on the water tablets for hypertension) have done it but my mild hypertension - I was 145/90 and I'm 120/75 now - has gone and I think that the pomegranate has done it, as I never really saw much effect from the two pills, coming off or going back on.

The Zoladex is rumoured to produce breasts. It hasn't to me. It is said to promote hair growth - I wish. The sex life is in the past, that's true (so far anyway) but when you've been married as long as Lynne and I have, that isn't such a big deal. She says I'm a more equable bloke now, presumably as a result of the testosterone being banished, so that's a good thing. And let's face it, if the choice is to live happily and fruitfully but monkishly or die randily, it's an easy choice.

If you've read this far, thanks. I'm only at the start of a journey that others have been on for years so I know much less than them, but my tip is this - go for the power of positive thinking, relax and enjoy life - live in hope. I want to do so for many years to come, but if it's only a few years then they will have been filled with good things. And who knows, in five or ten years we may have a treatment to kill this beast.

Later: PSA the day after I finished EBRT was 0.7. More good progress!

In my opening report, I judged my satisfaction with side effects of the EBRT a bit soon, though. I found the effects cumulative. So I needed the support of Imodium intermittently for about ten days afterwards, say two packets of six pills. The effect on my waterworks has not died away, however. Two weeks after EBRT finished, I'd say I'm still up once or twice a night with an urgent need to pee. Also, on the back of our narrowboat during our recent holiday, I was grateful for that sophisticated navigator's aid, the jam jar (to prevent accidents) and the rural (and therefore uninhabited) routes we took! My brother had the same treatment a couple of months ago and was free of the side effects in a month. So I'm hoping to emulate him. Meantime I have a hernia gauze repair op due tomorrow and see my Oncology consultant at the end of June.

Next update late summer.

 

UPDATED

June 2008

 

 

Thought I'd add a few thoughts after seing my oncologist yesterday.

1. If you're going to have a DRE and I guess I'll be having them every three months for the rest of my life, take it from me that to have a little lady doctor with slim fingers and a light touch beats the hell out of some great big ham fisted jerk doing it. I wouldn't say it was a pleasure, but I guess it'll be the closest I get to sex now! It isn't exactly a case of lie back and enjoy it because the position taken is on my left side, but I tell you it is tolerable.

2. Perhaps being told, as I was, that my prostate is now small, soft and smooth and knowing that that my PSA at 0.7 is what my GP called "normal" has made me a bit euphoric but I was able to tell my cronies who asked after my health this morning following my appointment yesterday that I now have a prostate as good as any of theirs and maybe a bit better (except that it's totally useless!)

3. So, I'm feeling very positive. I have every reason to hope for the best. However, the odds are that the PCa will return at some stage, the hormone treatment will cease being effective at some point, metastases will occur and other treatment will be necessary. But, hey, rules were made to be broken and I hope to be an exception to the Partin "rule".

4. I seem to have hit a wall weightwise. I'm aware of the puppy fat in my groin area that's down to the Zoladex and I don't seem to be able to shift that and it looks as though 16 and a half stones (231 lbs) will remain my fighting weight. But I am proving that weight gain doesn't have to take place. Of course, cutting out the red wine medicine would probably take me down a few more pounds, but that would be a bit like cutting off my nose to spite my face.

Cheers!

 

UPDATED

September 2008

 

 

Just a quick note - August PSA was 0.5, down from 0.7 three months ago. Urologist appointment imminent but nothing to talk about. It's "steady as she goes" - or wait another three months to see if there's any change, up (possible bounce) or further down.

Weight still on target, no covering to the bald patch and no boobs developing. I think I've even detected stirring in the undergrowth during a recent cuddle....Watch this space!!

 

UPDATED

December 2008

 

 

Just had a further PSA result back. As at December 2, '08 PSA = 0.3, down from 0.5 three months ago. The treatment is working. I'm feeling cautiously optimistic. I see my oncologist next month and urologist in March. I'm sure they'll be as glad I am, as I expect the appointments to be pretty brief!

Only slight fly in the ointment is that my Cholesterol is up at bit: 4.9 to 5.5 in two years - a side effect of the treatment? Probably nothing to worry about, but I'll check it out with my GP later this month.

 

UPDATED

March 2009

 

 

Just had the result of another PSA test, 5 March 2009. I seem to have hit my personal plateau at 0.30, the same reading as three months ago.

Recently had a another digital exploration which characterised my prostate as small and flat. Just had a discussion with Claire, my excellent PCa specialist nurse about the implications of the PSA not dropping to less than 0.1 (which they call undetectable), as I had secretly hoped. In short, there are no implications. It may be that the PSA number will drop further, or it may rise a bit. Only if it rises rapidly into the whole numbers, 2s and 3s, would they probably vary treatment. Changing the ADT or introducing chemotherapy might then come into play, or possibly consideration would be given to removing the prostate (salvage surgery), which is acknowledged to be risky.

All I can say, with other survivors, is that I feel fine, weight is under control, no serious side effects from the ADT and the PCa is evidently under control.

Life is good.

 

UPDATED

July 2009

 

 

Another three months have passed, so I've had another PSA test. I had hoped for a third 0.30, but my reading from 19 June was 0.50, back to the level in September 08. This may be a case of "PSA bounce" or it may be a sign that the cancer is less responsive to ADT, possibly becoming hormone refractory.

I've decided to have another test in a month's time before I see my oncologist in August and have my six-monthly DRE. The PSA test and the DRE may reveal which of those alternatives I'm facing. Chances are that nothing will change treatment-wise for some months in either event.

Otherwise, I'm fighting fit and enjoying life.

Another update as soon as I have anything useful to add.

 

UPDATED

August 2009

 

 

I had a further PSA test on July 23, 2009 to check on whether I was in the midst of a deterioration of PSA readings, implying the possible return of PCa.

In fact, the reading of 0.4, a month after 0.5, the two previous quarterly readings having been my nadir (so far) of 0.3, just illustrates what others have called a "PSA bounce". I'm not sure I'd dignify it with such a grand title, seems to be more of a "PSA wobble" to me!

In the light of the improvement, I'm content to wait three months for a further test.

 

UPDATED

October 2009

 

 

Another quarter, another PSA test. This time, October 15, 2009, stable at 0.4. Spoke to my Urology Macmillan-funded Nurse (who is very helpful) - no need for a consultation; she'll put me down for a telephone call in six months or so after a PSA test. She expects that I'll take an ADT holiday after three years on the stuff (it's two already) and see what happens. She expects a reading under 1.0 or possibly a bit over. The opinion I had from my Oncologist three months ago (that "there's no cancer down there") seems to be right. I'm feeling increasingly chipper about this disease. The big C now is Cure rather than Cancer - I'm beginning to dream of a normal and fairly long life - and it feels good! And Yet. Here's a sobering tale.

Every few months I've come across a Geordie bloke from Rugby, he walking his Pointer bitch, Tilly, me walking my Pointer dog, Henry, along the route of the former Great Central Railway. Not quite a year ago, just after we'd had the change from British Summer Time to Greenwich Mean Town, we met and exchanged pleasantries. "Yes, I'm fine" he said, "Well, actually, not really. I've got Prostate Cancer.". He was Geason 9, like me, and with about half my initial PSA reading, his was about 32. He was awaiting scans.

"Welcome to the club that nobody wants to join," I said, and pointed out some web sites that might be useful to him, including this one. I also told him that I'd been living with PCa for a year or so. I, too, felt fine.

Next time I met him, he'd been put on trial medication involving oestrogen patches and after adjustments to get the dosage right his PSA had come down to 3. He'd learned that he had mets (broken ribs and one in the spine, but he was unaware of these beforehand) and that his prospects were not good.

After another couple of months, I saw him again with his wife and chatted. He was now finding his PSA rising to 12, then 15. He was using all the pills and potions that are available from health foods shops and food freaks and hoping against hope that he might beat the thing.

He was given chemotherapy. After a while, he was unable to walk the dog any more.

I saw him no more. He was buried yesterday. Graham was a smashing bloke, kind hearted, considerate, compassionate. I had looked forward to comparing notes on PCa for years. PCa didn't kill him. The chemotherapy did. His vein walls collapsed as a side effect. He died at home, with a Macmillan Nurse beside him, in his favourite armchair, but unable to receive further treatment because of the state of his veins. He died peacefully, and, so I am told, in no pain.

I feel so very lucky and so very, very angry at way this awful disease strikes indiscriminately and with quite unpredictable severity.

For Graham's sake as well as my own, I shall stay angry, positive about beating the thing and carry on enjoying life to the full. "Do ya feel lucky, punk?" "Hell, yes, I do"

 

UPDATED

February 2010

 

 

Another quarter, another PSA test, another half year so another chat with my tame oncologist.

January PSA was 0.7 up 0.3 from three months ago. This could be another "bounce" or it may be the start of ADT failing. Only time will tell. So far as I can tell from the Advanced Prostate Cancer website, biochemical failure is regarded as having taken place after three successive increases in PSA, provided that a minimum of either nadir plus two or three is reached, i.e., either 2.3 or 3.3 in my case. I'm a long way from that. It will be August at earliest before I know whether I've had three successive quarterly increases (and maybe not then if I'm in another bounce), but at the implied rate of increase since my nadir, it should be several months after that before the trigger level is reached, if indeed it is reached. I don't see the oncologist again until then. Meantime, three more twelve weekly Zoladex jabs are due to take me through to over three years on the stuff, which will probably earn me a holiday!

Health remains fine - only side effects are loss of libido, hot flushes and about 7-8 lbs of weight gained. No problems, really.

 

UPDATED

June 2010

 

 

Mid April 2010 PSA - same old 0.7. Health fine. Even hit my weight target - see earlier postings - of less than 16 stone (224 lbs) last week; never thought I'd make it but golf, a couple of warm June days and sweating heavily whilst working in the engine compartment of my boat did the trick!

Only thing to add is that I've had some slight bleeding from within my prostate, noticed as a pink staining of the first few teaspoonsful of pee on random occasions, plus some involuntary discharge overnight. Endoscopy today (June 8, 2010) confirmed that this is a result of the EBRT having made my prostate so small that the urethra through it has narrowed, constricting the flow. So I've been put on Finasteride 5 mg/day to open up the urethra. The bleeding appeared to have stopped three or four days ago, but if it doesn't recur I guess the drug will have worked.

I'll report progress in further quarterly updates.

 

UPDATED

August 2010

 

 

Before my June ensdoscopy I had a blood test. Unbeknown to me this involved checking my PSA and it came out at 0.8. Not vastly different, but it led to some confusion when I was quoted it as my last test result when I knew that that had been 0.7. My next regular PSA test was on 26 July. Surprisingly, this came out at 1.2.

Saw my oncologist - the top man and not an underling - on 5 August. He thought that the bleeding was of little concern. Just a case of the prostate recovering slowly from the EBRT. He would not have prescribed Finasteride, therefore, but thought it would do no harm. What does a man do when the experts disagree? I've decided to give the Finasteride six months (which is supposed to be the time it takes for optimum effect in BPH cases) and then if no effect give it up. It seems possible that the rather sudden rise from 0.8 to 1.2 in six weeks was caused by the endoscopy and DRE. At least that's the advice I've had from Urology nurses, that the effects of either can last for some weeks.

But what if the Finasteride, too, is irritating the prostate? After all, it is trying to make what is already a very small thing (in my case) even smaller. If that's happening - and continued, occasional, minor bleeding might suggest that - then the PSA might rise a bit more before subsiding when I cut the Finasteride out. I face a bit of a conundrum until the six months is up at the start of December.

Meantime, my oncologist is quite happy with the PSA level and in his words it will be years before I need to worry about my PCa. I put all this at some length in case it crops up in any case or rings a bell with anyone viewing these pages.

 

UPDATED

November 2010

 

 

Late October 2010: Another quarterly PSA test and another 1.2 reading. Pleased that it is stable.

After a discussion with the Urology nurse who said that Finasteride should have had an effect by now (it hasn't - except arguably to make things worse) have come off the stuff. My theory is that it actually irritated the prostate. If my next reading shows a reduction from 1.2, I shall be right! The nurse said that my previous understanding - that it took six months for the drug to have full effect - only applies in the case of BPH. Pity that wasn't made clear at the outset, could have saved the NHS some money. She was also full of the old baloney about doubling the PSA reading for those on Finasteride to give a "true" reading. That understandably applies where the prostate is reduced in size by the drug so expresses less PSA. If the drug can't reduce one's prostate because it has a minimal size already then the formula is irrelevant (as I am confident the next reading will prove!)

Another report in a quarter, folks.

 

UPDATED

February 2011

 

 

Late Jan 2011, another blood test, another quarter gone by. Virtually unchanged PSA at 1.3. Obviously being on Finasteride for the previous two readings did not require a doubling of the PSA number to give a "true" reading, so I've debunked that piece of Urology-fiction.

I think the elevation from 0.8 to 1.2/1.3 is almost certainly caused by the intermittent bleeding I'm getting from my diminished prostate. My oncologist agrees and given my level of fitness and health, both good, doesn't want to change a winning formula. No worries about osteoporosis. So I stay on the Zoladex for the forseeable future.

Side effects? Continued lack of sex drive and occasionaly hot flushes. That's it. I've lived with that for nearly four years now, so am well used to it and quite content.

 

UPDATED

May 2011

 

 

PSA test on 13 May gave 1.5. The number is creeping up each quarter, but my PSA doubling time is three years, so the PCa is under pretty good control.

Normal cholesterol and glucose. Weight now just hovering over 15 stones 7 lbs [217 lb/98.6 kg], far better than I imagined would be possible. I'm fit and well.

 

UPDATED

November 2011

 

 

Last PSA in August was 1.9, so gradually creeping up but not at a level suggesting treatment change - my view and that of the oncologist I see.

Since then the blood in urine phenomenon became more pronounced and I took myself off in the middle of the night to our regional casualty department about three weeks ago when I found myself unable to urinate. I suspected blood clots blocking the urethra and so it proved. To my relief I produced what seemed like litres of port-coloured "old" (so they told me) blood-stained urine. It seems that fresh blood is bright red, old blood is port coloured.

They found a minor urinary tract infection and gave me antibiotics. Miraculously an hour after taking the pills (just coincidence of course!) all the gross bleeding and clots vanished. I'm now back to "normal", which is a bit of pink staining sometimes at the start of a pee.

Not content with this and wanting to know why I'd had the bleeding/blockage crisis, I pressed for a cystoscopy. I had this on Monday last. The Urologist found a couple of nodules on the front wall of my bladder He thought they were from my PCa when it was found over four years ago and not mets. I'd had a PSA test before the cystoscopy (it was due this week and made sense not to have it after the cystoscopy). The result today was 1.8. Yes, not the gradual increase of recent times, not a drastic increase such as bladder tumours might have produced, but the reverse!

Am I chuffed about that! I shall almost look forward to a routine further cystoscopy (TURBT, I think) with a much fatter tube which will involve scraping the nodules and testing them and possibly removing the things. This will be under general anaesthetic as an in-patient. Probably a few weeks away.

So I can report a second PSA bounce. Is this a record - after four years of ADT?

 

UPDATED

December 2011

 

Just come back from seeing a Urologist, one I've never met before, which was not a good start. I had the TURBT three weeks ago, experienced some bleeding thereafter for a few days but have been completely free of blood in my urine since. I've just about got over the bruising to my urethra and the removal of the nodules.

I was expecting to be told that the nodules were benign and the problem had been resolved. It turned out that there were three sites quite close together and near the neck of the bladder from which samples were taken and the abnormalities removed. The Surgeon removed the nodules and was confident enough about the treatment not to give me the usual chemotherapy dosage which follows the TURBT procedure.

Alas, the lab results showed abnormal cells, ie cancer of the bladder. The Urologist I saw today talked of treatment options which might come out of a Multidisciplinary Team meeting, including removal of the bladder and prostate. Scary! Many oaths (under my breath) were expressed! I await developments, but guess that treatment with mitomycin (ie chemotherapy) is likely as the guy doing the TURBT thought he'd cut everything out, so it must have been pretty superficial and thus early stage cancer. No doubt there will be some more CT and MRI scans etc to ensure no spread.

So was I genetically pre-disposed to this thing and perhaps the EBRT brought it forward a few years or was it a side effect of radiotherapy as in my late brother's case? I shall never know. Another battle to fight, anyway.

I wonder if there's a YANA type site for bladder cancer??[Perhaps the best place to start looking for support would be on the relevant Acor Mailing List where the Bladder Cancer List has 705 members]

 

UPDATED

January 2012

 

Bladder Cancer confirmed in December and it must have been growing for some months, although the three tumours found and partially removed were just a few mm in diameter, too small to show in the CT scan. I move to chemotherapy for the BC in February - a four months course, following which radical cystoscopy will probably be done.

Had a dreaded DRE on 18 January, followed immediately by a PSA test which gave only 1.9, so barely changed (it might even be a lower figure if unmolested!). Oncologist suspects that from the flat but firm texture of the prostate that there may still be PCa cells in it. Three years ago it was small, soft and smooth, after radiotherapy, so somthing has been going on down there.

Oddly enough, I see that as good news, because if the prostate comes out with the bladder, though I'll need regular check-ups, the prospect of a cure for both is quite good.

David's e-mail address is: davidr.collins@yahoo.com