People & Lifestyle story, March 2007
| BETTER LATE THAN NEVER - BUT WHY SUCH AN AVOIDABLE DELAY?
A lesson for all men (and their partners)
By: Robin Hooper |
My symptoms - having to get up frequently during the night to pee - had been creeping up on me from the mid 1990s. My GP told me at several consultations over the period 1995-2001 that there was nothing to be concerned about - this was natural at my age (65-70). When I mentioned PSA tests, he said they were unreliable and could give rise to unnecessary anxiety. Furthermore he said he didn't believe in them. He did not give me a digital rectal examination nor suggest that the matter be monitored. I didn't question his judgement at the time not having the knowledge that I have subsequently acquired.
In early 2003 I happened to come across a questionnaire on the Internet prepared by an American University with a medical department with a high profile in urological matters. My score from the questionnaire put me in a high risk category and recommended that I consult my 'physician' immediately. At my next appointment with my GP on another matter I mentioned this questionnaire to him. Only then did he arrange a PSA test.
It came as a great shock to learn that my PSA was over 70. I was fortunate to have private medical insurance and immediately arranged to see a local urology specialist and his oncology colleague. As well as a bone scan, which fortunately was negative, I had an Ultra-sound biopsy which confirmed that there was a tumour on my prostate but it appeared to be a relatively small one. The local specialists were puzzled as to why I had such an elevated PSA with such an apparently small tumour and took the view that it was too late to deal with the tumour by surgery because of the likelihood that the cancer had spread outside the prostate. By this time my anxiety levels were rising steeply. The local specialists were suggesting chemo-therapy and/or hormone treatment. They did not exude confidence as to the success of the treatment.
A close friend of mine who had recently had a radical prostatectomy urged me to get a second opinion and mentioned a consultant who had treated him. I saw this Harley Street specialist surgeon who diagnosed a large anterior tumour which the biopsy had not shown. A subsequent MRI scan confirmed his diagnosis. He said that two years ago he would not have operated on a case like mine with such an elevated PSA, but from recent experience considered it was the right thing to do. My relief at his offering me the hope that there was a cure was, needless to say, very great. My family were extremely concerned about the operation (as was I).
In May 2003, within a month of the first meeting with the specialist surgeon, he carried out a radical prostatectomy. The operation appeared to have been successful although he did explain that because of the size of the tumour (11.36 cc in a 73.2 cc prostate), he had to operate so close to the margins of the prostate, and there was a possibility that some 'straggler' cells from the tumour could have remained. If this proved to be the case my PSA would begin to rise again. If it rose above a threshold of 0.5, it would be necessary to have a course of external beam radiotherapy.
Thankfully I had no problems with incontinence following the operation, only slight constriction of flow which a subsequent minor procedure put right. I still have a problem with potency but it is improving and hope it will eventually return to normal. My PSA level fell to 0.1 within two to three months of the operation.
Unfortunately my PSA, which I was tracking at 3 monthly intervals, did begin to rise. Some 15 months following the operation it had gone above the 0.5 threshold. I then had 30 daily (barring week-ends) sessions of radiotherapy, which was almost totally free of any discomfort. My PSA gradually fell within approximately 7 months, to 0.1, where it remains to this day (March 2006 - some 3 years after the initial diagnosis of my cancer).
[I complained to my local Primary Care Trust about my GP. When they were unable to resolve the problem to my satisfaction I subsequently referred the matter to the Ombudsman who was unwilling to pursue the matter, stating that there was insufficient evidence of my condition, from the records that my GP made, to conclude whether or not he should have carried out a PSA test at the earlier dates. They were critical of the GP's poor record keeping.
My complaint was that my GP had been negligent in not diagnosing my condition earlier when I initially requested a PSA test, and that the radical prostatectomy could have been carried out with much less risk if the condition had been discovered two or more years earlier. Because the tumour was so large by the time it was discovered (11.36 cc), there was a greater inherent risk in removing it, and of course the longer the delay the greater the risk that the cancer might have spread outside the prostate. My GP's excuse was that he was following NHS guidelines not to be too zealous in pursuing prostate problems.]
I remain profoundly thankful that my friend advised me to get a second opinion and thankful for all that my specialist and his team have done for me.
If there is a further lesson to be learnt from my case, it would be to insist on a PSA test from one's GP if there is any suspicion of prostate problems. Also a PSA as high as 70 ng/ml doesn't always preclude surgery. Fortunately it seems that the NHS now takes prostate cancer more seriously than it did in 1995 when I first drew attention to my urinary problems.