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.
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.
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!!
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.
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.
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.
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.
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".
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.
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.
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.
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.
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 foreseeable future.
Side effects? Continued lack of sex drive and occasionally hot flushes. That's it. I've lived with that for nearly four years now, so am well used to it and quite content.
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.
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?
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]
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 something 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.
Nothing new to report - undergoing chemo for bladder cancer prior to a radical cystectomy - and it ain't very pleasant!
So this is just a test send. I'll do a proper update when I next have a PSA reading to give.
I'll update when I have a revised PSA. Meantime, this is a test message!
After two cycles of chemo PSA was 0.7. After three cycles it is 0.5, same as in Sept 08. So I read that as buying me three years plus, other things being equal. I start the fourth and final cycle in a couple of days and will be interested to see if I can reach my PSA nadir of 0.3.
Next steps will be another CT scan and cystoscopy, probably followed by a radical cystectomy.
Finished chemo for bladder cancer mid April, due an internal inspection of the bladder in a couple of weeks. The chemo period was unpleasant but the three months are in the past and I'm fine - a little less energy than before but that will return and my hair and beard are thinner, but again I'm told the follicles will recover. Main thing to report is that the PSA has been held at 0.5 and this with an enlarged prostate! This enlargement is a new factor but pretty normal for a 68 year old, I guess, and may have accounted for the steadily rising PSA over recent years. However, with such a low PSA and knowing from the CT scan that there is no lymph no node involvement, I can be positive about the PCa future.
I'm coming up to five years living with PCa and I can't see why I should not make at least another five. Whether the Bladder Cancer will let me is another matter, but if, as I hope, the chemo dealt with the BC and that this was indeed caused by the EBRT then it should not recur. My (60 slice) scan was clear and no lymph node enlargement has occurred so it is pretty unlikely that mets will develop from that route. I had/have a 7mm nodule in my upper right lung but that was unaffected by the chemo so is probably (like 99% of such nodules) benign. Had it been malignant it would have got there via the blood stream. BC behaves a bit differently from PCa in that respect.
The greater risk to my survival is definitely from the BC but if there's an all clear from the cystoscopy I have a fighting chance of five years on that front also.
Cytoscopy yesterday. No trace of residual cancer in bladder. So the TURBT and chemo worked perfectly. If I'd taken the Urologist's and Oncologist's advice I'd be in Intensive Care today with my bladder, prostate, lymph nodes removed, a bag on my belly and at risk of a multitude of surgical complications.
Flexible cytoscopy in three months to check on progress and probably some more to two years out. If I make that OK, odds are that I'll make 10 years post diagnosis. The big risk is of course recurrence, but that's so with any form of treatment. And all the previous treatment options remain available to me.
So it looks as though I've successfully dealt with the most severe, but perhaps rarest, side effect of EBRT, to whit - bladder cancer. So if it happens to you, don't despair but do act early if you experience blood in urine after EBRT.
Just had a routine cystoscopy to check on bladder health, following three weeks of haematuria. Saw the pictures on the big screen as the examination took place. Quite a messy area including some blood on my anterior bladder wall through my prostate and down to the sphyncter. That was on Tuesday. On Friday I had a TURBT (now, consider, this is the NHS in England, so would you get faster service anywhere in the world?), which I assumed would be a biopsy, but actually the surgeon cleared all the abnormal cell growth, leaving just healthy tissue. Interesting experience as I had a spinal block for the first time and chatted with the surgeon immediately the procedure ended. Not a very comfortable experience afterwards (two days on hospital with a catheter for longer than I've had before) and I await results. The surgeon thought the tissue looked more like PCa than BC, but I shall know the pathology results in a fortnight. Given the haematuria, I expected some rise in PSA over three months. The increase from 0.5 to 1.2 surprised me a bit, but given that I quite expected some infection or PCa creep to be found, perhaps that jump, still less than my pre-chemo level of 1.9, is not a surprise. Will it drop back with the abnormal growth removed? I shall retest in a month to see.
Meantime, it is rather odd to think that a PCa recurrence would be better news than BC. The reason is more treatment options. About the only next step if the BC has returned is a radical cystectomy, which would take out the Prostate, seminal vesicles and lymph nodes etc. The surgeon warned that this is more difficult in one who has had PCa EBRT.
Result of biopsy - BC not PCa, superficial and removed, but aggressive cancer, nonetheless. Decided I'd taken enough risks with recurrence and would go for radical cystectomy (RC), subject to CT scan results. CT scan showed no spread. Urologist strongly advised RC, I agreed and the big op (six hours) will be on 4 October. Urologist thought that my PSA record indicated that the PCa had been beaten and was surprised that I was still on ADT! Interesting divergence of views between oncology and urology.
In view of this I'm not taking another PSA test until well after the op when healing has been completed. Next update later in the year - wish me luck! [We do indeed!]
It's mid November 2012 and I've just come from a meeting with the guy who removed my bladder, prostate etc on 4 October in a 5 1/2 hr op. Some interesting points emerged.
1. There was no trace of bladder cancer in any of the bits removed so it is highly likely that BC will not rear its ugly head again in my lifetime. A great relief!
2. There was prostate cancer in my bladder neck (presumably causing the slight haematuria that persisted up to my op), but none in the seminal vesicles or any of the lymph nodes from around my pelvis. Note that this is nearly five years after radiotherapy to the prostate and seminal vesicles (EBRT that was targeted away from the bladder, but which I had assumed had leached to it, causing the BC).
3. The Oncologist and Urologist in discussion had been prepared to take me off ADT on the assumption that the PCa in my bladder neck had been the reason for the PSA level last reported (1.2 pre-op). I scuppered that because I had a PSA test done two days ago because I thought it would inform today's discussions. It showed up 0.5. In other words, the bladder neck PCa had been contributing 0.7 to the PSA number. This means that some other PCa cells somewhere in my body - distant from and not local to the prostate - have continued to contribute to my PSA reading over the years. [This position is often described as micrometastasis or systemic disease. A brief explanation is in E-Letter 9] Obviously they have been pretty well controlled by the ADT, but equally clearly they have been too small in their cluster(s) to show up in any CT scan. My PSA nadir was 0.3 back in 2008, so if, as seems likely, that too came from distant cells, then the growth in that factor has been 0.3 to 0.5 over four years. Not too much to worry about there.
So where does that leave me? The PCa is still well controlled. No distant mets are evident and yet the potential is there for a colony to grow. Fortunately there are now lots of treatments, including ones undergoing trials, to deal with any flaring up of my PCa, a marked improvement over five years ago. I see my Urologist again in three months and for the first time he will be tracking my testosterone level. Yes, that's right, to date nobody has troubled to look at how effective the ADT has been in suppressing my testosterone!
A final point before I close: I have been through major surgery but I have regained perhaps 95% of my normal energy levels, much better progress than had been predicted, weight now 15 st 9 lbs (219lbs) - about where I'd like to be - and I'm working on getting muscle tone back in my arms and shoulders, where I was shocked to see what a difference the op and its aftermath had made. I'm as positive about the future as I have been over the past five years. Life is good. I hope this story is helpful to any readers starting out on the PCa journey.
Saw urologist today after blood tests last week. PSA up a bit (maybe within assay accuracy margins), testosterone undetectable, all blood tests OK. Confirmed that PCa found in bladder neck was Gleason 9 (5+4), although Gleason scoring has not been validated in patients with ADT so this should be taken with a pich of salt. I'm cleared to get back to golf - just need the snow the clear first! Doing some work with weights to get back shoulder and arm strength ready for the big swings. Weight up a bit, too, but I put that down to the cold weather we've had in recent months and relative inactivity. Still dog walking 4-5 miles a day (mind you, feels like twice that through the snow and ice/slush). In summary, fit and well, enjoying life and looking forward to many years of it!
Due to have a sonar scan of kidneys to check functionality and a flexible cystoscopy to make sure the remaining bit of urethra contains nothing nasty. If anything emerges, I shall do another update.
Change of e-mail address
Yesterday I had a routine flexible urethrascopy (same as cystoscopy, except they don't go in so far!) which unfortunately showed some polyps in what remains of my urethra. I had been experiencing a clear, mildly corrosive discharge from my penis (which is now disconnected from anything which should produce this) plus some slight blood spotting. Biopsy taken. A routine sonar scan is also due next week. Suspicion must be that I have a local recurrence of either bladder or prostate cancer, but this has to be confirmed. If so, the likely treatment seems to be a urethradectomy which involves an incision behind the scrotum and pulling out the whole length of the remaining urethra to the tip of the penis "like a piece of string" as the guy doing the urethrascopy put it to me. From my researches, this isn't a day surgery type op (much as I'd wish) and seems to involve up to a week in hospital. I should want to minimise this as much as possible as hospitals are dangerous places to be if you want to avoid infection.
I think there will be a Multi-Disciplinary Team meeting about my case and possible treatment soon after the scan, which will deliver some advice to me. More info when I have it.
March 2013. Biopsy result through. Tissue removed from urethra was prostate cancer tissue. This explains my PSA reading and hopefully indicates that the Gleason 9 PCa had escaped the prostate capsule only to reach the bladder neck (which has been removed) in one direction and the urethra in the other direction. My urologist advises no change in treatment at present. I'm happy with this. The PSA level will be the guiding determinant of future action, I assume. At least I know where the PCa is, it is visible in the polyps seen in the urethroscopy, and it is being kept under control by the Zoladex jab I receive every 12 weeks. Apart from an occasional spot of blood from my defunct penis, the PCa is causing me no trouble, although it would be nice one day to have a Zoladex holiday!
May 2013 appointment with Oncologist who has see me for five and a half years. We discussed slight rise in PSA - undoubtedly caused by the urethral polyps - and whether there was a window of opportunity for curative action. He is going to raise this with the multi-disciplinary team (who had already discussed me a month or so ago, but without him!). He thinks that the time that has passed since diagnosis with no PCa appearing anywhere other than locally probably means that it could be excised with removal of the urethra. I'm happy for this to happen as what I have left performs no useful function! MRI scan is to be arranged and I'm on Casodex for a month to see if this hits the PCa differently and perhaps knocks the PSA back down and by implication reduces the PCa in the urethra. Seems funny after all this time living with PCa to be talking about a cure, but better that than something worse!
1 August 2013. Saw the bagman to my regular oncologist today. This followed a urethroscopy and diathermy on 19 July. Urologist told me that the PCa which had been at the margin of and half way down the mini-urethra I now have, had spread but that he had removed and cauterised the lot. He had not seen PCa behave like this before. He took a biopsy. Bagman confirmed that the biopsy showed superficial PCa and not a return of bladder cancer or the start of cancer of the urethra. The Urologist had suggested that repeats of the procedure would be required at intervals.
PSA has risen again to 1.7 from 1.3 a couple of months ago. This led to a discussion about Casodex, which he thought I was on. I explained that it had been prescribed only for 28 days, but that I had asked my GP or a further supply of another 28 days. I had not continued further as nobody had suggested this and there was no evidence of any effect on my bleeding or PSA. Anyway, outcome is that I return to Casodex to supplement the Zolodex on which I shall be for life. Apparently the Casodex effect may not manifest itself for six months or so.
Penile bleeding and discharge of lymph continues (smells of acetic acid). Suggests that the cauterisation was not 100% successful. I see my Urologist in eight weeks so hope to learn a little more then.
PSA has doubled in just over two months to 3.8. My Urologist has concluded that I should be on one of the newer medications now as Casodex isn't working. He doubts if further surgery would do the job either as his most recent effort appears to have had no effect. I'm still getting bleeding from what I assume is a return of urethral polyps. So it's over to the Oncologist to come up with an answer. Due to see him on 5 December but I may try to bring that forward.
Otherwise fit and well and raring to go!
5 Dec 2013. Horrible news that PSA has shot up to 13. Oncologist (I saw him this morning) accepts that the Casodex is not working and has taken me off it at once. He denies the possibility that the cancer has been thriving on the Casodex. We shall see! I am to go on Abiraterone though he regards this as a short term fix. I put the idea to him of sticking a radioactive wire up my penis to deal directly with the PCa in my urethra. His response: "that's not such a daft idea". He's going to find a way of doing it. Problem is that the radioactive wire has to stay in place for a week in rather flexible (and shrunken!) tissue. How to keep it from falling out - that's the issue. First though I must have another pelvic MRI scan and a full body bone scan to make sure there is still no PCa visible anywhere else than in my urethra and to check on its spread down my pipe.
It seems that I'm right at the cutting edge of PCa treatment here and a very rare case. I'll post more here as things develop.
11 December 2013.
Started on Abiraterone (Zytiga) with Prednisolone today. Advised of possible side effects and warned that I should be on these drugs for life (how long though?). Asked not to worry about PSA. The focus for now will be on how well I tolerate the new regime. Zoladex continues. So, I know that testosterone production by the testes was removed by Zoladex and this continues. It is not clear why Casodex was prescribed since it appears that the adrenal glands were not producing testosterone, but it didn't work anyway (in terms of reducing PSA). Now the production of testosterone within the PCa cells is being targeted and should be eliminated by Zytiga. That should mean that the PCa cells die as they are deprived of their life source and so no more should be produced. We shall see if the theory plays out in practice.
I shall be seeing my Oncologist and a specialist oncology nurse on alternate months when the next month's supply of the drugs will be dolled out. Next PSA report after 7 February 2014.
7 January 2014
PSA down from 14.6 to 8.9 in a month. No side effects from Zytiga. Bone scan clear. Steady as she goes!
4 February 2014 - PSA down to 2.3 in 28 days. At this rate will it be undetectable in a month? Urethral bleeding much reduced. MRI scan showing no change from previously. It appears that a cystoscopy will be required to see what remains in my urethra, if anything by then, presumably more than a month away. Remarkable results from Zytiga continue!
Saw oncologist this morning, 6 March 2013. PSA down from 2.3 last month to 1.6 this time. Great, eh? Maybe...
Trouble is my urethral bleeding came almost to a stop a fortnight ago then gathered strength again back to the level last December. So, it may be that I dipped to near zero mid-month and am on the way back up! Alternatively, perhaps the cancer nodules (which are too small to have shown up on recent scans) burst randomly to cause the bleeding. At a PSA of 1.6, there surely aren't many there.
Anyway, plans for some radiation treatment have been made. I shall be given three brief (a few minutes) high doses of a radio-isotope in a tube, the first on All Fools Day. The dosage, shape of irradiated volume and positioning will be controlled by a scan.
Another update next month after the procedure. Meantime I'm still on Zytiga/Prednisolone and the Zoladex continues.
3 April 2014, PSA down another notch over the past month - 1.6 to 1.5. Just had my first session of three of a new type of brachytherapy, normally used in gynaecological conditions. This involved me being on my back for three hours, of which less than five minutes actually involved movement of a radioactive isotope on the end of a wire up and down my urethra. The rest of the time was spent in a cystoscopy (which revealed that the cancer in my urethra has been dying off under the influence of the Zytiga I'm taking, but that two small patches remain), inserting a plastic tube in which first a dummy wire then a radioactive wire moves about, sticking the tube to my body so that it didn't move, setting up the gadget which moves the wire about and procedure planning and checking the programming of the gadget. Most of the time about a dozen people stood around watching the procedure, which is innovative (first time in the UK, I'm told, and maybe worldwide). We usually look for experience in folk working on our bodies in hospitals. None available in this case!
Anyway, straightforward enough, if time-consuming, completely painless, but with some bleeding afterwards. I guess this will pass. Two more sessions in a week and a fortnight's time, following which I hope for further degradation of my PSA number.
Three weeks after uneventful completion of three radiation treatments, PSA continues to decrease, down from 1.5 to 1.2 in a month. Only side effect from radiation, apart from some tenderness down below is a milky discharge from penis as destroyed cells are removed and healing takes place. No bleeding now. No change in drug treatment likely until/if PSA becomes undetectable.
Another Oncology appointment, another PSA reduction, 1.1 as at 30 June 2014. Now evident that despite the urethral treatment which was successful, bleeding being a thing of the past and the radiation discharge having ceased 10 days ago, leaving me with a healthy if shrunken old man, there must be PCa cells circulating in my blood stream and maybe lodged in undetectable sites elsewhere. Still, the Zytiga continues to deal with that at a gradual pace. So, steady as she goes!
3 July 2013 - another month, another 0.1 PSA drop to 1.0. Prednisolone, I now understand, stimulates one's appetite. This explains why I'm having to balance enjoying eating and exercising with greater care!
Another month, but this time my PSA has gone up a notch, from 1.0 to 1.1. Is this the turning of the tide? Only time will tell; my oncologist is unconcerned. I am fit and well and have no PCa symptoms. As Abiraterone is prescribed a month at a time, there will be continuing monthly updates, though I fear nothing very helpful to readers at present.
Another month, another small step up in PSA to 1.2. Evidently the answer to last month's question is that a turning point has been passed. My nadir this time around was 1.0. It appears that I have some PCa cells multiplying at a slow rate that are independent of testosterone. In a few months a change of medication may be required, but clearly Abiraterone is still exerting a measure of control so no urgent need to change.
October Update - PSA down again to 1.0. Last month's speculation obviously in error. What is going on here? Perhaps next month will give a better clue.
Another four weeks and PSA up slightly to 1.2. Oncologist not concerned at the bobbling around in the 1.0 - 1.3 area. Zytiga is considered to be doing its job of controlling the PCa. Dreams of progressing to undetectable seem to be misplaced. Weight this morning 16 st 1 lb (225 lbs) after a week of modest dieting. Want to drop to and keep it below 224 lbs. No side effects from Zytiga.
PSA still 1.2, weight 15 st 10.2 (220 lbs), 100 kg, the lightest I've been since immediately after having my bladder and prostate out. Target is 217 lbs of end of December. I've no doubt I shall make it. I've now been on Abiraterone/Predisolone for 12 months and it works! For me, there have been no side effects and I've shown that the urge to eat and gain weight can be controlled. Clearly we have the PCa under control. Oncology appointments between quarterly sessions with the Consultant will now be by phone and I see no need to continue with monthly updating of this record. Only if something drastic happens will I make a fresh entry other than quarterly.
PSA continues at 1.2 - that's three months running. Oncologist told me today he couldn't prescribe three months Abiraterone at a time as that would cost £10K! So I continue with monthly visits. Thank God for the NHS and free treatment!
PSA still 1.2, weight still less than 100 kilos (220 lbs) - I did hit my target at year end of less than 217 lbs, and have allowed variation between that and 220 lbs since, e.g, 218.4 lbs this morning. I remain fit and well and enjoy an active life. Keep taking the pills!!
Not three months since my last update but as I have had two consecutive PSA; increases - to 1.3 Last month then 1.7 this month - it starts to look as though my time on this treatment may be drawing to a close. There is no doubling time yet, of course, but if I hit 2.4 next month that would be a three month doubling time which ordinarily would suggest a change. All my other blood indicators are fine, so maybe not. More news next month.
PSA unchanged from last month so my speculation about PSA doubling was unwarranted. NO change in medication. Weight OK at 15 st 9 lbs - that's 219 lbs or 99.3 kg. Next update in three months unless any significant change (wobbles in PSA don't count towards that).
PSA doubled in six months to 2.8. Urethroscopy yesterday showed cancer is still at top of urethra stub and obviously survived the brachytherapy a year ago. A change of treatment seems to be indicated. Not sure if any local alternative to radiotherapy is available at Coventry and suspect the systemic approach of docetaxel is on the cards, unless I can be referred elsewhere for a different approach. Weight steady and general health and fitness 100%. Update when I have a change to report.
26 November 2015
I was gobsmacked today to find that in a month my PSA has gone DOWN from 2.8 to 0.9, lower than it has been since February 2013. I can only assume that the urethroscopy/diathermy I had four weeks ago removed some cancer in my urethra. I had thought that with no attempt to cut out any cancer using the hot wire approach (too dangerous, I was told on the day by the Urologist) that the alternative approach (of which I was unaware until today) of using a heated roller ball (new one on me!) actually removed some of the cells which had become resistant to Abiraterone.
Anyway, today was a day for celebrating (and I did tonight!). I wonder if this heat treatment may have wider application. I also wonder what will happen at my next PSA test. Watch this space.
It was too good to last. PSA has gradually crept up, but still only 1.7, up from 1.6 last month. Weight still controlled at 220 lbs (15 st 10 lbs) and general fitness fine. No immediate prospect of treatment change, but at least since NICE changed its advice, it is now free to the NHS for those of us who have been on Abiraterone for 10 months or longer.
PSA crept up to 2.7, bloods OK, weight up a bit to 223 lbs (not fighting the Prednisolone quite so well, obviously!). No specific side effects from Abiraterone. General health fine. Looking into curative action with renowned urologist at another hospital. More when MRI and Choline PET scans completed.
21 July 2016 - appointment with top urologist at QE, Birmingham, following pelvic MRI scan an abdominal Choline PET Scan. No report yet available on the former - a five week delay in such reports! PET Scan showed known tumour at penis base, but also a couple of lymph nodes in the pelvic area affected. So I have three mets, not one. That ruled out surgery as a treatment option. Next stage is to discuss with regular oncologist a change in treatment, probably check. That happens next week when I expect PSA will have continued its climb. To be continued...
PSA went down last month to 2.3 and Onco believes flares in lower lymph nodes may not be cancerous, perhaps some infection or just overworking thanks to 18 having been removed when I had my radical cystectomy four years ago. MDT will review the evidence from old and recent scans and come to a considered view next month. How one's hopes go up and down in this business! Update in a month.
PSA creeping up now 3.4 (at 25/8/16). MDT was supposed to meet to consider my case thoroughly and compare PET scan with previous MRI scans, but nobody had the wit to organise this. Current belief is that there is a lymph node below my airways which has either bladder cancer (first recurrence, but unlikely) or PCa, together with two pelvic lymph nodes exhibiting limited PCa involvement. No change in treatment (Abiraterone/Prednisolone) but there will be another MRI scan in three months to detect any changes. If there are changes in the highest lymph node then it is probably BC (in which case chemo with Cisplatin again would follow), but this can be checked by a scope into my lungs. If no changes, then PCa has spread a bit, but current treatment plan will continue, until Abiraterone has to be replaced, because it has become redundant.
Latest CAT scan confirmed earlier noted possible lymph node spread - two points in lower abdomen, one just below left lung, but worryingly some suggestion of a small effect in my liver. This could be bladder cancer recurrence or simple PCa spread, despite Abiraterone. I am to have a couple of biopsies - one via needle into my liver and the other a camera shoved down my airway. Hmm, the latter doesn't sound too comfortable! Should be done before Christmas to decide which sort if check treatment I should have. Meantime, carry on taking the Abiraterone despite the gradual increase in PSA! Update with more when I know it.
Still awaiting results of biopsy to lymph node behind my trachea. Apparently suspicious area in my liver is inaccessible to biopsy except at great risk. No change in treatment until we know what mets I have!
Well, that was a turn up for the book! Last month's 4.4 PSA turned into a much better 3.4. That took me back six months. My oncologist reported (19/01/17) that my biopsy showed a PCa met in my lymph node behind my trachea. Hooray! Eh, how so? Well, he expected the return of bladder cancer, potentially much more difficult to handle. So we carry on with Abiraterone, though he believes it is no longer working, hence the gradual PSA rise over the past few months. What then caused this relatively big drop? Dunno. He goes to Florida when my next appointment would be due, poor chap. So I see him in six weeks, with a gap in Abi of at least s week maybe 10 days. Isn't that risky? I asked. Not so, his reply. Often does Abi holidays. News to me!
Plan is to do another MRI scan in February and probably move to docetaxel ln March. We now have physical evidence of Mets beyond my urethra as well as the PSA guidance, so it's time to move on in treatment terms.
I feel fine. Minimal weight is being maintained. No side effects apart from those of long standing. Pretty optimistic about the future, despite all too many younger public figures pre-deceasing me.
More in six weeks. Who can say what I may have to report?
Just had results of my Feb CAT scan. No change in dimensions of Mets. PSA resumed its upward climb, after last month's aberration - now 4.6. Oncologist view is that PSA is not relevant to my case and that radiographical evidence will be the guide in future. Plan is for up to 10 cycles of docetaxel, starting later this month. Quite happy about this, though disappointed that abiraterone helped me for only three years. Mets became evident during that period although PSA never showed a sharp increase. Onward and upward!
12 April 2017. First cycle of docetaxel knocked out PSA down to 3.3. No side effects worth a mention. Very satisfactory!
Very happy at start of third cycle to be showing a PSA reading of 2.1. The pattern now seems clear, first week of minor headaches, slightly nauseous, second week recovery noticeable in first cycle after seven days, nine in second cycle and then third week back to normal. I think I can detect a much softer and smaller feel to my urethral tumour. Let's hope progress is maintained!
Further May update at beginning of fourth cycle: PSA down again to 1.4. Note that each reduction is a little less than the one before. Other things being equal, I guess more than six cycles may be needed to reach undetectable, if that is possible. My nadir is 0.3 over the nearly ten years.
13 June 2017. PSA down again (but a much smaller drop) to 1.2. 5th cycle starts tomorrow. Only side effects in fourth cycle tiredness and lethargy. Plan is definitely for 10 cycles, so shall not be free of this until the end of October. It will because very late holiday season this year!
Fifth cycle completed, PSA down again to 1.0. Was about to start cycle 6 when I had a massive and frightening attack of what I guessed was neutropenic sepsis, but which was in fact unrelated to the chemo. All the symptoms of the dreaded disease but just caused by an insect. Alas, the little bugger had been feasting on something even more disgusting than me before it sampled my flesh. Everything put back by a week in view of need to get the bacterial infection thoroughly washed out of my body by strong antibiotics before restarting chemo. Oncologist intends to supplement PSA info (little weight given) with clinical evidence and scan results after ten cycles before deciding what to do next. Anyway, so far so good!!
After six cycles of chemo, my oncologist and I have decided enough has been achieved. PSA is stable and low, pulmonary CT scan showed the chest lymph node is now back to normal. I think the urethral tumour has probably gone, as the discharge has finished but a scan is awaited to prove this. What chemo did for me apart from these positives us inflict pulmonary embolisms (lung blood clots) on me which we have found is the cause of my breathlessness. I am now on separate treatment to thin my blood and prevent others arising whilst my body gradually absorbs these.
Don't have to see the Oncologist again for a while two months and no more chemo. Whoopee. Now for a holiday!
In past two months PSA has risen from 1.1 to 2.4, so Prednisolone has hardly been effective. Scans showed all mets reduced or eliminated, but urethral discharge (assumed to be of dead PCa cells sloughing off) has resumed following the cessation of chemotherapy. Oncologist decided to use Dexamethasone to replace Prednisolone and review in two months, possibly in conjunction with a further scan if PSA continues to rise. My weight has risen to c 16 st 5 lbs (229 lbs), presumably fluid retention due to steroid use. Unwelcome and won't be reduced with the change of steroid. Otherwise, fit and well and hair growing back, but finer and pure white on scalp.
Saw a new Oncology registrar, so she knows nothing about me save what the computer screen shows and she works to a Consultant who is new to the job also. PSA up to 4.4 after eight weeks on dexamethasone, so that's a quadrupling since I finished chemo and puts me back almost to where I was seven months ago. Plan now is to do another CAT scan to see what has been going on and then probably six cycles of cabazitaxel. What fun!
Old's e-mail address is: auldcodger72 AT gmail.com (replace "AT" with "@")