THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2014 SO THERE IS NO UPDATE.

My late father was diagnosed with aggressive prostate cancer at the age of 67 in 1998. I started having annual DRE and PSA tests from my father's urologist in 2003. The PSA was about 2.0 ng/ml until March 2006 when it rose to 2.6 ng/ml. The urologist said to re-test in 3 months, but although I wasn't, and haven't been especially worried, I told him that I had a feeling I might have the same problem as my old man, and he suggested I have an immediate MRI scan, not something I've seen recommended before a biopsy on the excellent YANA site. At this point the story took the first of a couple of strange twists which I will describe below.

I happened to be abroad when the results of the MRI scan came through which indicated what looked like a "high grade tumour" at the lower right hand side of the prostate and recommended a biopsy. My wife tried to book an immediate biopsy with my urologist but he was away, so she phoned a contact and arranged one with a top private (ie you or your insurance company pays) clinic in London.

I had 12 samples taken in that biopsy by a well respected doctor at the clinic and it turned out that 11 were clear and 1 was cancerous with Gleason grade 6, with the tumour being 5% of the affected core. To me this seemed a reasonable result and, having seen three doctors at the clinic, and spent several hours on the Internet, I decided to watch and wait, drink pomegranate juice, eat leeks and follow the dietary advice you receive when you have this condition.

But things changed when I went back to see the original urologist again for his view of the work at the private clinic. He said he was concerned that only 1 sample or "core" had been taken from the area identified by the MRI scan as showing a tumour, and advised that I should return in a few weeks ( about 3 months after the first biopsy) for a second biopsy, which he would carry out himself.

Being just a few weeks after the first biopsy, I was not keen on a second, but decided to do so and had that on the 4 August 2006, with 19 "saturation" samples being taken. The results were markedly different this time, indicating a tumour of about 1cm diameter running from the base "to the mid line", being 80% cancerous, with gleason 7 (4+3). The MRI scan had proved remarkably accurate and, even though I had had 12 samples taken the first time they had missed the real picture.

My old man's urologist, who had carried out the second biopsy recommended surgery (not his speciality) given my age and the aggression of the tumour. I subsequently saw three chaps around England who specialise in laproscopic/robotic surgery and had the prostate removed on October 5, 2006.

The operation seemed to go very well and I was immediately continent, and both sets of nerves were spared. I walk a lot anyway, and started walking on day 2 after the operation around the car park at the hospital and surounding roads and soon built up to 2 hours a day, my normal daily dose.

I also made good progress on the ED front, nothing great, but sex after a fashion, after 5 weeks or so.

I did have a very sore back for 2 weeks but that was probably due to the awkward position on the operating table and got better of it's own accord, helped by plenty of gentle walking.

I went back to see the surgeon after a month to get the results of the "histology" and for a general progress chat. To my surprise, and to the surgeon's as well, I had an extraprostatic extension on the right side, although the margins and everything else were clear. The histology report from Bostwick said the tumour extended by 1cm by 0.3cm outside the prostate. The surgeon said that I had been caught "in the nick of time" and that the extraprostatic extension "was a bit near the right hand nerve bundles but I think sparing then was justified". these last words worried me a bit and I do wonder if he would have spared the nerves on the right side if he had been aware (which he said he was not) of the growth outside the prostate at the time of the operation.

The Bostwick report said the pathological staging was T2A but I asked the surgeon if it should not have been T3A, given the extension and he indicated that I was right and the Bostwick report was wrong on this point. I also wonder if the size of the extra prostaic growth should have been in mm, not cm, on the report. The surgeon, a very good chap, as have been all the people I've seen, showed me a US hospital (Sloane Kettering) "nomogram" which predicts the likelihood of recurrence and this said I have an 85% chance of non-recurrence within 5 years, and if it doesn't recur within 7 years he regards the cancer as "cured".

On further reading the Bostwick report I noticed that the cancer was of a "mucinous" type. On looking this up on the Internet, and it turned out to be extremely rare indeed. One report I read said there were only 61 reported cases at the time and that the prognosis was very poor with only a 25% chance, on average, of being alive in 5 years. Further reading eventually indicated reports more recently which contradict this and suggest that mucinous tumours are no worse than typical grade 7 Gleason tumours, and this came as a big relief.

My first post op PSA took place in mid December 2006 and this came back as "less than 0.05" and therefore "undetectable". Having had fast progress on the ED front to start with progress is slower (not helped by being an England cricket fan) now, with sex possible in good conditions (not too much booze etc)with Levitra.

Overall, I've been very happy with the treatment I've had, but the fact of an extra prostatic extension which was not identified at the time of the operation and it's closeness to the nerve bundles sounds like a bit of a worrying factor.

Above all, you need some luck, which I hope I have and I hope the readers and contributors to this web site have plenty too.

Very good luck and best wishes to you all

Will update with my next PSA.

Tom

Had my second post-op PSA test after about 5 months and happy to say came out at less than 0.05 ng/ml. Less good news, as many of you have said on also, on th ED front.

Having had sex without help from Viagra after only 4 weeks and 2 days, I was congratulating myself on my good fortune.

But in November 6 weeks after the operation and 36 hours after taking Cialis (Viagra type medication) I got "atrial fibrillation", a type of heart arrythmia where the heart beats fast and irregularly.

The cure was a night in hospital,sedation, and an electric shock which corrected the condition. The doctors did not reckon the heart issues were connected to the drugs, but I was not sure so stayed off them for a while. The minor trauma may have affected libido or confidence and I can still get some sort of temporary erection, but not good enough for full sex.

So I've managed to join a small and select band whose performance after 6 months or so is worse than after one month. Am still calm but beginning to get a bit anxious, although I know many are worse off.

Also the rather clinical approach to taking Cialis seems to slightly turn off the missus, so cordinating opportunities for sex (or attempted sex) is starting to go by the wayside in our busy lives. I can see that it's easy to sleepwalk into losing it rather than using it. Must get organised soon.

Will update you in 3 months.

Best of luck to you all.

I had my third post surgery PSA test after 8 months in mid June 2007. Having been pretty philosophical up to then, I was apprehensive about this one, having been worried by the extra prostatic extension discovered post op.

Previous PSA results have been phoned through by the doctor's secretary the same day, but this time a temporary secretary was in charge, so no phone call came and I climbed the wall, imagining the delay meant a bad result. However, after a couple of days of pestering the doc (for which I now feel embarrassed), I found out that it was still less than 0.05, so my luck has held so far.

On the ED front, I was struggling when I last reported, but things have improved, and I can manage fine now with Levitra which I take once a week.

Good luck again to everyone, and I'll update you in 3 months with my next test results.

Tom

I had my 12 month PSA test in early October, following surgery in 2006, and am pleased to say the results were good at less than 0.05.

On the ED front, I take Levitra once a week, and that does the trick, and has been doing so for about 6 months. I'm lucky in that regard, but am still wary of taking it more than once a week, since I had "atrial fibrillation" for the only time in my life (a type of heart arrthymia), necessitating hospital treatment, when I took it twice: although the docs said Levitra was probably not to blame.

In spite of my good luck so far, for which I am very thankful, it's surprising the number of mental hoops you have to jump through to understand PC and its possible effects. For example, all the surgeons I saw pre-surgery, felt my chance of a "cure" (ie no necessity for further treatment) was very high, about 90%), but the the risk of serious ED was also high (about 50%).

In the event the ED side has worked out well but the statistics on "biochemical failure" when you have an extraprostatic extension (ie tumour outside the prostate) are confusing. A nomogram available on line from Sloane Kettering university hospital in the States, for example, says that men in my position have an 88% chance of needing no further treatment for 7 years. Many Yana stories indicate patients being told they are cured if their PSA is still very low at this point.

However, other studies seem to indicate that biochemical failure continues to occur long after 7 years, especially for those with tumour presence outside the prostate, and it's difficult to get detailed statistics, as with the above nomogram, for the long term.

I'm not complaining, but the area I and the doctors thought would be a problem (ED), no longer seems a big issue, but the situation about long term prognosis is more troubling than I would have thought. No doubt uncertainty is par for the course with PC.

The YANA site is a great help. Thanks to Terry and everyone else for their contributions.

Best wishes to you all.

Tom

My luck is still holding and the 18 month PSA was undetectable, thank goodness. I manage not to think about the results in the weeks running up to the test, but inevitably it does make you weigh up your chances.

I completed an on line nomogram post the test, from Sloan Kettering hospital in the USA, which gives you a percentage chance of "disease free progression" after you have filled out your details. The results were that someone in my position (Gleason 7, pre op PSA 2.6, extra prostatic extension, all else clear) would have an 84% chance of being clear in 8.5 years from now ie 10 years after the operation. This seems to be at odds for other reports I've read which indicate something like a 50% chance of recurrence for non organ confined disease.

These are only averages, of course, but the divergences of opinion are baffling even so.

On the ED front doing pretty well: it almost feels like a boast on this site when so many are struggling. Still need Levitra but getting by.

All in all can't complain, and am very grateful for any luck I have and to Terry and the contributors for providing such a rich source of information, infinitely better than most other sources, and cheaper too.

Best wishes to you all.

Tom

Pleased to report another good PSA result in September 2008, just about 2 years from my operation.

Going well on the ED front and can manage, just about, without Levitra. Long may my luck hold and the same for all YANA contributors and webmaster Terry. This site is a great help.

Best wishes and thanks,

Tom

Glad to say that I've had my 30 month PSA test and my luck is holding. Another good result, with PSA less than 0.03.

As reported previously, my post op results indicated that I had a rare form of "mucinous" cancer. I looked this up on the internet at the time and the prognosis was extremely gloomy from the very limited studies carried out on this type of cancer. One report I read stated that patients with this type of cancer had a 25% chance of surviving 5 years.

The medical world seems to have revised it's opinion in this area and more recent reports suggest mucinous cancer is no worse than "ordinary" cancer and, in fact, may be slightly less aggressive. This information may be of help to a very small minority.

Very best of luck to you all, and thanks again to Terry for his great work.

Best wishes Tom.

I had my 3 year PSA test in October and it's still registering < 0.03, unrecordable according to my consultant.

So I'm still one of the lucky ones.

Thanks to Terry and best wishes to everyone at Yana.

Tom

Apologies for the late update. I had my 3 and a half year PSA test back in April and it was still undetectable, so luck has been with me up to now. Minimal side effects, thank goodness.

I had better not continue to be a mentor since I no longer have easy email access, and apologies also if I haven't replied to anyone since this has been the case for quite a while.

Many thanks to Terry and good luck to you all. Tom.

My PSA is still undetectable after six and a half years, and I now have almost no side effects. I was diagnosed with "mucinous" cancer which is very rare and was thought to confer a significantly worse prognosis. However, the medics have revised their views and mucinous prostate cancer is now thought to be similar, or slightly better, than the more normal types. So no medical opinions are gospel in this area.