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Hugh J lives in England. He was 57 when he was diagnosed in June, 2009. His initial PSA was 7.50 ng/ml, his Gleason Score was 7a, and he was staged T1c. His choice of treatment was Surgery (Retropubic Prostatectomy). Here is his story.

I first went to my GP in February 2009 because I noticed that I needed to make an effort to pee and the flow was not strong. My father had died of prostate cancer at the age of 81, having been diagnosed 2 years previously. He had hormone treatment but his last few weeks alive were distressing beyond belief for him and something I will always remember, so had an initial PSA test and a DRE at my GPs-the PSA came out at 7.0 and my GP said my prostate was enlarged but felt smooth [I later learned from this website the DRE only checks one side of the prostate].

I was referred to a Urologist at my local hospital, just prior to this visit I had tests for urine flow, retention and ultrasound, another DRE and PSA - the Specialist Nurse confirmed that my enlarged prostate was large indeed, the PSA came out at 7.5, an increase of 0.5 in 3 weeks and urine retention was 20%.

The visit to the Urologist was a couple of weeks later and I decided to have a biopsy after discussion with the Urologist.

The biopsy was momentarily uncomfortable as the instrument was inserted and the guy doing the biopsy carried out the ultrasound inspection prior to taking 8 samples, none of which caused any discomfort. I was lead to believe that it was going to be a painful experience but it was not and only lasted 15 minutes, and is nothing to fret about.

Six days later the hospital rang to say that my samples had been given a Gleason score of 7 [3+4] and that 2 of the 8 samples were cancerous, both samples being on the left hand side of my prostate, at that stage I had not really understood the relevance of staging so didn't ask.

Went back to the hospital 2 weeks later and met with a Consultant Urologist Surgeon, who explained all the results to me and my options in a pleasant unrushed manner. I had by this time done a lot of reading on the subject on numerous websites including this one.

I was offered Watch and Wait, Radiotherapy or Open Radical Prostatectomy. I chose there and then, having previously decided anyway, to have Open Radical Prostatectomy. My reasons are as follows:

I had read many of the personal experiences on this website most of which intimated you should take your time deciding, get a second opinion etc on your treatment but to my way of thinking [maybe being an engineer and too pragmatic] I had a cancer in my body and it needed physically removing to get rid of it. To me the facts that I might lose my potency and become incontinent were secondary to ridding myself of the cancer and suffering the effects of it spreading, I am after all 'only' 57 and as stated watched my dad die a terrible death-I was not going to go the same way - sure most cancers of the prostate are slow growing but I was not prepared to take the risk of it spreading in view of my family history.

I did not consider any form of radiotherapy, its not 100% and causes collateral damage, something that I was not prepared to have as my bowels are somewhat 'delicate' as a result of previous bowel problems.

Watch and Wait was never a consideration.

I had my operation last Friday 7 August 2009. Immediately prior to the op the conversation with the surgeon once again covered the downside aspects but he assured me he would carry out nerve sparing if I had clear margins. It lasted 2 1/2 hrs and I woke up with an epidural and no pain. The surgeon came to see me that afternoon and said everything went well, the cancer was within the prostate and he had preserved both erectile nerves - would that have happened if I had delayed? Results of the pathology will highlight any problems.

I was out of bed the next day, walking around the following day and discharged on the morning of the 4th day with a catheter that will be removed in 10 days time.

I might add that I have always been extremely fit for my age and for the weeks after my diagnosis made extra efforts to attain peak fitness and I feel this contributed to my short stay in hospital, additionally I am Diabetic so I am very pleased to be at home writing this 5 days after major surgery.

Happy to answer any questions.

The next few weeks/months will be very interesting!

Later: I am now 1 month post-op and have been off the pain killers for just over a week, and lost 6 kgs (about 13 lbs) [now 75 kgs (about 165 lbs)]. The two week period with the catheter was not very comfortable a lot of the time, had the usual bladder infection and constipation as a result of the strong pain killers, both easily sorted.

Had good news from the hospital today, the pathology showed the cancer was contained within the gland, there was no broaching of the gland capsule and the lymph node that was removed was cancer free, will have to wait for future PSA results to confirm but looks hopeful.

Although only a month since surgery am 100% ED and the incontinence is more trouble than I had envisaged but time will tell. Still glad I had the procedure and not radiotherapy or W and W. Here in the UK the NHS (National Health Service) has been bloody marvelous for me - pity they got a bit of bad press in the US lately.

UPDATED

October 2009

Saw my Consultant Surgeon last week and he confirmed the histology on my prostate that showed the cancer was wholly contained within the gland. The result of the PSA test taken the same day was less than 0.1 which was good news indeed! The Consultant said there is no need for chemo or radiotherapy.

Now some eleven weeks post-op I have a reduced urine flow but my surgeon has said he will do nothing till at least three months post-op to ensure I'm fully healed inside.

For my incontinence which has only recently showed signs of improvement he has put me on Solifenacin [Vesicare] and what an instant difference it has made. My main problem with the leaking was walking but this 'anti-spasm' drug has worked wonders, I hardly leak at all now.

I have been on Cialis now for a month [10 mg alternate days] and things are definitely 'moving' in the 'Gentleman's Area'. Prior to taking the Cialis I was 100% ED but now can achieve a very mild erection, the surgeon expects things to take at least 6 months before I get an erection to write home about! It takes my partner quite a while to get me to the very mild state of erection and interestingly I orgasm but much less intensely than before and I have very little control-strange to have a dry orgasm.

Things are looking good at present, hopefully the next few PSA tests will be OK and I can look back on this experience. I am still certain surgery was very right for me and I arrived at that decision very quickly, no dilly dallying around.

UPDATED

January 2010

I had my second follow up appointment with surgeon 24th Dec and everything is working out OK - the histology on my prostate gave it a stage of T2a, so no extensions beyond the gland.

My second PSA test result was the same as the first.

On the erection front, things are improving well, two months ago I couldn't achieve any form of erection, now having been taking Cialis on alternate days, and the fact I am now five months post op can achieve an erection good enough for penetration.

I am still really glad I opted for the open radical prostatectomy surgery, the first 2-3 weeks post-op weren't fun but I feel I was right - no second opinion, no phaffing around making a decision on treatment options etc just get rid of the cancer!

UPDATED

July 2010

It is now 12 months to the day I was told I had PCa and 11 months since the open RRP. I've just had my 3rd follow up visit with the Uro-Oncologist,and the result of my 4th blood test which came out at less than 0.1 as all the rest have been, so excellent news.

I have been told to carry on taking the Vesicare and Cialis till my next appointment. I am completely dry, with no leaks and my erections are frequent and 90% back to as they were - my Libido has returned, and do not need a pump/injection etc.

Many people on here decry open surgery (hold it up as being old fashioned) but it has worked for me. [Not sure that this is so - there are more than 220 stories from men who had open surgery and I do not recall too many entries from men who chose Laparoscopic surgery being critical of those who did not]

UPDATED

July 2011

Have just had my two year post-op assessment and all is well.The Urologist has handed me back to my GP and only wants to review me annually as my last quarterly PSA test was less than 0.01 which is the best news one could have.

I have been off the Cialis and Vesicare for six months now and everything is fine, just had the odd little tiny dribble when aroused - after three or four pints in the Pub!!! but couldn't wish for a better result.

My next update will hopefully be in a year's time. Good luck to you all and should you wish to chat please contact me.

UPDATED

August 2012

Yesterday I had my 3 year review with my Consultant.

PSA is still undetectable, I'm on 6 monthly checks now, and everything is going well.

I don't need any form of medication etc to achieve a strong erection, the only time I have a very slight leak is occasionally during sex. Apart from that am dry all the time with no need to use pads.

I have a review again in 12 months with my Consultant.

UPDATED

October 2013

Another annual review has come and gone. PSA still less than 0.01ng/nl.

Have noticed in the last 12 months that when I am extremely fatigued I have had the smallest of leaks but so infrequent and small in amount I can live with it.

I have full erectile function but found a couple of months back I was losing my erection during sex-maybe because of my age possibly, I have just turned 62, my GP prescribed Levitra and the problem has not re-appeared. I have also found prior to sex I have to empty my bladder otherwise when I reach orgasm I leak. I have had no re-occurence of flow problems for peeing since the procedure after my RRP.

Here's to next years review.

UPDATED

September 2014

Just had my 12 month referral with my Urologist/Oncologist who did my radical prostatectomy in Aug 2009.

PSA has been less than 0.01 on each and every blood test so he is happy to hand my care back to my doctor. Only if it rises to 0.02 or above will he want to see me again.

I have no problems other than when extremely fatigued I very occasionally leak a tiny amount. Apart from that fully continent and potent.

UPDATED

October 2015

On my last annual visit to the Uro-Oncologist he handed me back to my GP with the previso I still have 6 monthly PSA blood tests to monitor my condition,he doesn't want to review me again. All blood tests in the last 6 years since surgery have been 0.01 or less.

The only side effects I appear to have -and they might now be age related [I'm 64]- I sometimes leak a tiny amount when extremely fatigued and sit down/stand up.Also possibly age related and I am diabetic, I still have the opportunity to take Levitra, I have no problem getting an erection but there was a period about 2-3 years ago when half way through intercourse I would lose the erection for no apparent reason.I still regularly have intercourse without having to take Levitra,again maybe fatigue related as I do suffer periods of chronic fatigue syndrome.

Overall, still very happy with my choice.

UPDATED

November 2016

All continues as before and still pleased with my decision.

I have noticed in the last few weeks when I take a pee I have a reduced flow and don't seem to be able to empty my bladder, I pee a lot frequently at the moment.

My GP has referred me back to the Urologist as we both feel it is probably the scarring in my pee-pipe reducing the flow of urine. I had the same problem after my operation but have been fine up until now.

Will post an update on the outcome.

UPDATED

December 2017

Last years 'little' scare went away before the Urologist outpatient appointment. Ironically, he was the same Consultant who treated me for kidney stones a couple of years earlier, he thinks a small, transient kidney stone may have been the temporary problem.

All is still well, PSA is still less than 0,01 taken every 6 months. I recently had a very bad chest cough and found that coughing attacks when seated occasionally caused a little leakage but all is well now and I'm completely continent once more and still have no erectile problems.

Hugh's e-mail address is: hugh AT swantonabbott.com (replace "AT" with "@")


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