I’ll call him Tom. He lived through the ordeal of dealing with prostate cancer. He wants to tell his story in hopes of helping others that may be at risk, or who may be going through it themselves.
I am married with grown up children and am writing this in the hope that in some way it may help someone else in a situation facing the prospect of dealing with Prostate Cancer who is a visitor to your web site. Or possibly it prompts someone to go to see their doctor if they are all concerned about prostate cancer.
In the autumn of 2007 I agreed to be part of the ProTect study being undertaken by Bristol and Cambridge Universities into prostate cancer (PCa). Prostate Specific Antigen (PSA) levels do not necessarily indicate that an individual has PCa as they do fluctuate quite a lot and are only a possible indication that something is wrong. Obviously if the level is extremely high then it is much more likely the disease is present. However a slightly high level may be offset by a subsequent one that is quite normal. Initially it only meant having a blood test to ascertain PSA. The norm for men of my age at the time was 4 but the study was including those with a PSA higher than 3. There are symptoms that give an indication that you may be suffering from PCa which include having to get up several times in the night to go to the loo. I had no such problem and thought there was no reason why I should have the disease. My father who lived to 100 had PCa but it was not the cause of his death. When I received the letter with my PCa, which turned out to be just over 3, it included a request that I attend hospital for a biopsy. Rather than just accept the situation I decided to go to see my own doctor for his advice. He suggested I had another PSA test as the levels do fluctuate. The result came back over 4 so his advice was to have the biopsy and hopefully put my mind at rest.
I duly went and had the biopsy which they said might be a little painful and cause you to pass blood in urine and possibly in your stools for a short while. It meant having an ultrasound of the prostate via the back passage first to identify exactly where the prostate sat and then two sets of five biopsies from each side of the prostate. In my case I did not have any pain at all and very little bleeding subsequently, although I do know that others did not have quite such an easy time. It was then a question of having to wait for the result.
I subsequently received a letter with an appointment for me to get the results of the biopsy. With hindsight it could have meant only one thing, I had the disease; otherwise I’m sure I would have had a letter saying that everything was ok. I persuaded my wife it was not necessary for her to come with me for the results as I was not really concerned at that time about the outcome. When I spoke to the doctor he first asked if I would agree to our conversation being recorded, I had no objections especially if it would help the research. He then went on to say that I had 20% cancer in two of the cores of biopsies. It was at an early stage and I had three options and also as part of the study they were asking if I would agree to ‘randomisation’ which meant that a computer would pick one of the options for me, but once agreed I would have to stick to it.
What was my first reaction? I suppose at the back of my mind it was what I really expected, I don’t know why, call it a sixth sense perhaps so I didn’t fall to pieces, something that surprises me when I look back as I can be quite an emotional person.
The three options were explained and were
1) Watchful Waiting, with regular PSA tests so that any significant increase could be identified and the possibility of taking one of the other two options considered
2) Have Radiotherapy or Brachytherapy, and
3) Have surgery to remove my prostate.
My initial thought was to ‘get rid’, but first to get a better idea of what the consequences of the options were I decided to talk to a radiographer and surgeon at the hospital.
The first option ‘Watchful Waiting’ meant doing nothing other than having regular PSA tests. This would still leave a chance that the cancer could break through the wall of the prostate and once outside could spread to the lymph glands and then travel around the body.
With radiotherapy the radiographer seemed to think it would be very straight forward but it would mean a daily (weekday) visit to the hospital for six weeks which, from my research, most people found quite tiring from the travelling as well as the therapy. In my case Brachytherapy (implanting radioactive ‘pills’ directly into the prostate to kill the cancer) was a no go as you need a good urine flow as the inflammation around the urethra tends to squeeze it up for a while and in my case would probably stop the flow altogether. The downside being possible incontinence and loss of erections.
Lastly the potential for an operation to remove the prostate. The potential side effects of the op were incontinence and the inability to get an erection without medical help e.g. Viagra etc. The surgeon I saw at the hospital said I had a 1 in 20 chance of being incontinent. It was at the time when the ‘Da Vinci’ machine was being first used by hospitals and the surgeon I spoke to was relatively new to using the machine. I did much investigation via the internet and discovered that to be successful with little or no side effects the op had to be done by a very experienced surgeon. I found the prostate cancer web site (www.prostatecanceruk.org) extremely helpful as you were able to ‘talk’ to others who had been through the same, and often more difficult situations.
So I found an experienced surgeon who I felt very happy with who used the laparoscopic method and got him to do the op. After the op I had to have a catheter which was removed after a week. During that time my erections started to return. So if anyone is in the same position and has decided to take the op route my suggestion is find a surgeon who does the op on a regular basis (not once or twice a year). If you can find an experienced surgeon (someone with several hundred op’s under his belt) talk to him and go from there.
I had intended writing this sooner but somehow life always seems to have got in the way, but I have at last managed to find time to finish off what I started several years ago. It’s now nearly several years since my op and my PSA continues at 0.01<, long may it continue.
I consider myself to have been very lucky, ok I had prostate cancer but it was picked up very early through a research project that I agreed to join voluntarily; and after having done my research into the various options I was in a position to be able to decide who did the op.
So, if you have any of these symptoms -
· Needing to pee more often
· Difficulty peeing or a weak flow
· Straining or taking a long time to finish urinating
· Feeling that your bladder has not emptied properly
· Needing to rush to the toilet.
…please go and see your doctor, it’s better to be safe than sorry.
If you have got this far, thank you for reading the article and if the information helps even one person seek out help sooner rather than later it will have served its purpose.