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Bob B and Linda live in England. He was 64 when he was diagnosed in September, 2009. His initial PSA was 7.20 ng/ml, his Gleason Score was 8, and he was staged T1c. His choice of treatment was Surgery (Retropubic Prostatectomy). Here is his story.

Suspicions were raised originally by a raised PSA from a routine blood test in Summer 2009. After three months it was still up so I went for a biopsy which confirmed the presence of cancer. The bone scan was clear so on the recommendation of the urologist I had a radical prostatectomy in November 2009 which went well.

However, my PSA was still 2.36 so we went for EBRT (External Beam Radiation Treatment) as well. I am more or less fully continent but can't manage enough of an erection yet for proper sex. Otherwise I am fine but my PSA is still rising - 3.36 in September 2010 and 5.24 in December. This suggests that they will probably start hormone treatment in the Autumn some time.

UPDATED

April 2011

When my PSA was tested again in early March it had nearly doubled, from 5.24 to 10.3 in three months. This came as quite a shock. The oncologist was prepared to wait another three months before starting ADT but after thinking about it for a couple of days I was not prepared to wait. I felt as if I was on a runaway train accelerating rapidly downhill.

I researched the possibilities and was quite keen to try a triple androgen blockade but my oncologist persuaded me to go with what seems to be the standard treatment here, i.e. four weeks of Casodex and monthly injections of Zoladex starting after two weeks.

When I arrived for my first injection at my GP practice I discovered they had ordered Degarelix [aka Firmagon] instead. This gets injected into the buttock instead of the stomach. I hardly felt the injection.

That was nearly three weeks ago and I haven't noticed any side effects to speak of. Yesterday I felt really weary for no apparent reason and rather down but that may not be the ADT. I'm sure it's very easy to imagine things.

On the brighter side I can now get quite a decent erection. It doesn't last very well but it is good enough for penetration - the first since my operation. I suspect this is likely to be a very temporary improvement but it did wonders for my morale.

UPDATED

June 2011

I have now been on ADT with Triptorelin (Decapeptyl) [aka Trelstar] for four months and it seems to be working. Using Triptorelin was a new departure for my GP practice but the administration is much easier than previous ADT treatments. The injection goes into the buttock and is (usually) painless. There are 1 month, 3 month and 6 month versions.

So far the side effects have been minimal. My sex drive is definitely reduced but not totally absent and with Cialis I can get an erection. Hot flashes are quite frequent but not a big deal - it feels as if I'm blushing when I'm not.

The big news is that my PSA is down from 10.3 to 0.43.

UPDATED

January 2012

I completed six months of Degarelix injections at the end of September. At that point my PSA reached 0.11. I had read that intermittent ADT produced no worse outcomes than continuous ADT and my oncologist concurred that I could come off the ADT for a while although she seemed to have no clear strategy. I was becoming frustrated with her reticence and reluctance to discuss alternative strategies so I asked my urologist to recommend a different consultant.

I have switched to a medical oncologist at Barts Hospital in London (Dr Shamash). He actually specialises in prostate and testicular cancer and was a complete breath of fresh air. We had a long discussion about all the options available. He agreed that intermittent therapy was the best option since testosterone deprivation is not good for the rest of the system. It's no good surviving prostate cancer only to die prematurely of heart problems brought on by the cancer treatment.

We agreed that we would wait until the PSA reache d 15 (!) before recommencing ADT. My rationale on this is that the PSA reacted very quickly to ADT (dropping from 10.2 to 0.11 in six months. Since coming off ADT, it has risen to 0.3 in three months. I'm having it checked at two monthly intervals until we can see a trend.

I feel much better in myself, my sex drive has returned and, although the old man is not what he was, normal sex is definitely possible. I still take Cialis twice a week.

UPDATED

May 2012

I am still in the off phase of intermittent ADT with Degarelix (Triptorelin). My PSA seems to be tripling every couple of months so I will start the second on phase at the end of the summer. I have no treatment or disease related symptoms. One thing I have noticed is the reduction in the size of my penis. I assume this is a result of ADT since, although there was a reduction after the operation, it had returned to its original size before the hormone treatment. However, it works fine otherwise.

UPDATED

July 2013

I am still continuing with intermittent ADT using only triptorelin (aka Degarelix). I'm at the start of an off cycle after my PSA got back down to 0.1. I had a bone scan at the peak of the last cycle. There were a couple of suspicious shadows, one on a rib which we'd seen before and one on one of my thoracic vertebrae. The final conclusion was that neither were cancer related. Why intermittent ADT and why monotherapy? Intermittent ADT seems to offer the best quality of life while offering a similar life expectancy to continuous ADT. While on ADT I suffer hot flashes which were worse in the second cycle, some depression and total lack of libido. Once I come off it the hot flashes and depression gradually disappear and the libido returns. At present the cycle lasts about 18 months, six or seven months on and twelve months off by which time my PSA reaches between 8 and 10. I'm sticking to monotherapy because there is little support in the UK for anything else. Medicine is largely evidence-based over here and there simply is not the evidence to support the triple androgen blockade used by several US specialists. So far so good.

I still leak a bit but only wear a very light pad, usually not at night. A couple of weeks ago I noticed traces of blood on the pad so booked an appointment with my urologist. I had a cystoscopy under local anaesthetic which revealed some foreign body embedded in the wall at the entrance to my bladder. I went back a couple of days later and had it removed under general anaesthetic. Still not sure what it was - possibly a wandering suture from my prostatectomy or a build up of deposit round the scar tissue. I went home after the op but during the next couple of days my bladder exit blocked twice. Fortunately my urologist had taught me to self-catheterise and I had a supply at home. Otherwise I would have been pretty scared. If you've had a prostatectomy it's really worth learning this technique - scary the first time you do it unsupervised but a doddle after that. Things have settled down now and my flow is excellent. I had an agonising pain at the end of having a pee yesterday and suspect I must have passed a stone. Interested to know if anyone else has had this problem.

UPDATED

August 2014

Since my last update the problems with urethral stricture have turned into a bit of a saga. Attempts to improve the situation have only made it worse. There did not seem to be any foreign object causing the stricture and attempts to locate one have damaged the sphincter to the extent that when standing or moving to standing from sitting I am almost completely incontinent. Fortunately the continence nurse put me onto an adhesive-free external collection system called Afex from iMEDicare which allows me to function more or less normally. At night I make do with a pad as I leak very little when lying down and actually get to pee normally when I get up in the night.

At this point my urologist referred me on to Professor Anthony Mundy at London Bridge hospital. He is the top specialist for reconstructive bladder and urethral surgery in London and to my amazement my insurance company agreed to pay for his services. The idea was that he would fit an artificial sphincter. However, to do this he needs first to do a dynamic flow test to check that the bladder itself is still functioning correctly. This involves lying you on your back, inserting a catheter, filling up your bladder, removing the catheter, then rotating you to vertical and getting you to pee. Unfortunately, try as they might and how they tried (ouch!) they couldn't get the catheter in.

Returning to the Professor I was told that there was a high probability, >50%, that the urethra would block altogether in the not too distant future. As I was planning to visit my daughter in the USA the following week this was not good news. He recommended fitting an indwelling catheter to avoid a major expensive crisis in the States. This was done but it ruined my holiday. I kept getting very painful spasms from my bladder trying to expel the catheter and the urethra became very inflamed. Walking about was very uncomfortable as the end of my penis also got very sore. I came home a week early and used the wheelchair service at the airports in order to get home.

The catheter is now out and I am comfortable again. We are now waiting for things to settle down (or for a crisis to occur) so we can see what the long-term damage is. If the damaged section of the urethra is not too great he will cut it out and rejoin the healthy sections (an asastomosis). Once I'm recovered from that he will fit an artificial sphincter. The aim is to get to a state where my wife and I can do our planned three month tour of the southern hemispere - too risky at present.

I am still on intermittent ADT (roughly six months on - twelve months off) and the PSA is continuing to react very well to this. I anticipate that it will be around 0.1 at the next reading. This time I had a single six-month injection of triptorelin.

UPDATED

October 2014

I have been off ADT for two months and my PSA is doubling every 6 or 7 weeks. I suspect my ADT 'holiday' may be shorter this time. It took several weeks for the hot flashes to subside after the end of ADT. The good news is that I am having an Artificial Urinary Sphincter fitted at London Bridge Hospital by on Nov 11 by Professor Anthony Mundy. I'm told he's the top guy so I am very lucky my insurance has agreed to pay for the operation. If all goes well they will activate it on December 22 in time for Christmas. It will be great to ditch the Afax bags. They have been a godsend but they're still a real nuisance.

UPDATED

November 2015

The installation of my artificial urinary sphincter went well and I recovered quickly - no dressing at all after 24 hours. I'm not completely continent, I leak a bit when sitting down or standing quickly but one Tena level 2 usually lasts the day and I don't need anything at night. Going for a pee can be a bit fiddly as you have to squeeze the device in your scrotum and it can make aiming difficult when urine is first released under pressure. Overall though life is back to normal. My wife and I are on a three month trip to the States and the South Pacific and all is going well. I had my last six month ADT shot in February so I'm now in a 'holiday' phase. My PSA was below 1 in August so it still seems to be doing the trick. I'm in very good health otherwise. Reached 70 in September.

UPDATED

October 2016

It is now 5 and a half years since I started intermittent ADT. I have been having six month injections and then waiting till my PSA reached about 10 before restarting. Until now this has worked well but this time the nadir was 2.27 instead of 0.83 last time after which my PSA started to rise even though the Triptorelin should still have been suppressing it. I have now been moved onto continuous ADT with the possibility of adding bicalutamide if my PSA reaches 5.

I've just had a wonderful month staying with my daughter in the USA with some lovely walks. Unfortunately I have started to experience chest pain when going uphill steeply which may be angina (a fairly common side effect of ADT). I am seeing the cardiologist in a few days.

My Artificial Sphincter is still working well.

Bob's e-mail address is: bob.bishop@crozierdc.co.uk


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