I had my first PSA test in December 2000, when I was 52, as part of a medical check-up via my company private health scheme. I was warned that the test was not 100% accurate and could lead to unnecessary tests in the future if the result was a false positive. I went ahead anyway thinking that I would rather know about a potential problem early on instead of when it might be too late.
My first reading was 2.4 which was not a cause for concern at that time as it was also my base reading. My second PSA test was 2 years later in 2002 and was 5.0 at which time, because of the significant rise in the PSA, I was referred to my consultant. Three months later, in March 2003, my PSA was 5.8 and my consultant decided to take some biopsies under GA. Nothing was found.
Six months later, December 2003, my PSA was 6.9 and more biopsies were taken under GA but, again, nothing was found. By June 2004 my PSA had risen to 8.9 and my consultant was sure something was not right so he took more biopsies of my prostate from within the urethra – a mini TURP by GA. Again nothing was found. In the December of 2004 my PSA actually fell slightly to 7.9 but rose again the following March to 9.4 when more biopsies were taken under GA. Nothing was found.
From September 2005 until June 2009 I had regular 6-monthly blood tests and my PSA continued generally to rise although some falls were occasionally recorded. By now my PSA was 13.9 and my consultant wanted to take some more biopsies.
My private health insurance no longer covered this “chronic” condition so I was referred back to the NHS and in October 2009 I had more biopsies taken at King George’s Hospital via local anaesthetic. Of the 16 samples taken, 1 came back positive which was devastating even though I had been half expecting it. My Gleason score was 3+3.
I was assigned to Rob, a clinical oncology nurse (who is also one of Orchid’s Male Cancer Information Nurses), who provided literature regarding the treatments, explained the process of the Multidisciplinary team and generally assured me that something could be done.
I was informed that radio therapy or radical prostatectomy were my main treatment options and I subsequently spoke with Dr. Gibbs the radiologist and with Mr. Kelkar the consultant surgeon regarding the pros and cons of each option. I was given plenty of time to decide and waited until after Christmas before deciding on Laparoscopic Radical Prostatectomy i.e. keyhole surgery. The benefits being much less scarring and shorter recovery time.
I had my operation on Wednesday the 24th March 2010 at King’s College Hospital where keyhole surgery was then performed. I felt OK afterwards, with no pain, and had a catheter which would have to remain in for 10 days. I stayed in hospital for 2 nights then came home to rest although gentle short walks were recommended. I had some leakage and had to wear pads but eventually the leakage improved and I stopped wearing them on the 4th July 2010. I also had to self inject with CLEXANE, a blood thinning drug, for 40 days after leaving hospital. It was not as difficult as I feared.
I had my first follow up at King’s College on the 11th May 2010 with Mr Brown, the surgeon. He informed me that everything had gone well, but that my Gleason score had been uprated to 3+4, although this should not affect me as I’d had my prostate removed. I mentioned that my “flow” was not as good as I expected. But no action was taken at that time.
By the time of my next follow up on the 21st July 2010 my flow had deteriorated and I was given a flexible cystoscopy to see if there was a restriction, which there was. So, on the 19th August 2010 I had a Urethral Dilatation which found a narrowing of the Anastomosis, the delicate join between the urethra and the bladder. This was slit, under GA which much improved the flow, although I again got some slight leakage. Over the months this has settled down and although the flow is slower again it is not as poor as before the surgery.
My most notable side effect is the inability to get an erection although orgasm is still possible. I was prescribed 5mg Cialis daily for a year but this did not help in my case neither did the occasional use of 20mg Cialis. Fifteen months after my operation I was prescribed a vacuum pump. This is partly to help prevent atrophy while at the same time helping my sex life by enabling me to generate an erection. The other side effect is that I still get the occasional “squirt” usually when suddenly lifting something or standing up, but it is not of any concern to me.
Two years on my regular PSA checks so far have been unrecordable and I am happy with the decision I took.
Q and A
How did you feel when you were first diagnosed? Did your feelings change during your treatment?
Even though over the years I felt I would eventually be diagnosed with prostate cancer, when that time came I was devastated and thought I would be dead in a few years. As time went by, looking at treatment options and talking to other sufferers, I became more used to my situation and worried less. Now that I’ve had my treatment I do not give it any thought although when the time comes around for my next PSA test I get anxious in case the cancer might have returned.
Was there a particularly difficult or distressing part of your treatment or your cancer journey?
Initial diagnosis was difficult to accept and the day of surgery was a very anxious time.
What is the most important thing your family and friends did to support you?
My wife was with me on my journey the whole time – at consultations, investigating various treatment options, at meetings with the surgeon – invaluable. Also, talking with friends and other sufferers was reassuring.
Can you describe a particular Low/High point during your treatment?
Low point – day of initial diagnosis.
High point – coming round after surgery and being told everything had gone well.
Do you believe the experience has changed you as a person? If so, in what way?
I don’t think it has changed me. However I do feel more aware of my own mortality.
If any, what medical or emotional support would you like to be offered in the future to support you after your treatment ends?
If I get through all my regular checks with no return of the cancer that will be all the emotional support I will need.
What would be your message to other men affected by male cancer? What would be your message to their partners?
It is probably not as bad as you think. But ask as many questions that you can think of. There are many treatment options available and survival rates are improving. You will probably have some side effects from your treatment – be prepared to accept them.
Partners – accompany your partner to all consultations, tests etc. Read as many articles about the conditions that you can but do not be frightened by potentially serious treatment risks.