Help us to stop prostate diseases ruining lives

People & Lifestyle story, June 2006


A DIPLOMAT’S STORY

 

By: Bruce Dinwiddy

Returning to the UK in November 2005 after 3½ years as Governor of the Cayman Islands, my thoughts were more on my approaching retirement from the Diplomatic Service than on the reasons for my occasional urinary impatience  --  mostly evident (at least in retrospect) towards the end of long meetings of the Cayman Islands Cabinet.  During 8 weeks of busy pre-retirement leave in London, during which we moved house, I initially attributed a perceptible further deterioration in my urinary stamina to the change of environment and climate.  I felt basically fit, but decided after Christmas to see my GP.

I took the opportunity to give the GP the results of routine medical tests done while I was in Cayman.  Noting that my last PSA score, in October 2003, had been 2.2, he recommended that the PSA test be repeated.  A week later, I learnt that my PSA was now 5.  The GP said there could be many explanations for this, but mentioned for the first time the possibility of prostate cancer.

Taking advantage of my health insurance, I was referred privately to a urologist who arranged another PSA test and a biopsy.  Two weeks later, five days before my 60th birthday, cancer was confirmed: a Gleason score of 7, which the urologist described as aggressive, bordering on nasty.  My PSA had risen to 7.5.  An MRI scan was arranged for the next day.   The following week, my wife and I were dismayed to be told that there was already extensive local spread of the cancer.  We were advised to discuss my options with a surgeon and an oncologist.

We had meanwhile, during the previous couple of weeks, learnt more about prostate cancer than we would every have imagined  --  by reading, by searching the Internet, and by talking to a wide range of friends and acquaintances including several who had been treated for the same disease. We had decided early on to be fully open with family and friends about my condition.  We never regretted this.  They were a great comfort and strength during the difficult period of diagnosis and initial treatment, and they remain so.

For, in those difficult days around my 60th birthday, it was not at all clear how to proceed.  We yearned for clear-cut advice from the experts, but for a while were confused.  My surgeon, chosen on the basis of excellent reports we had heard from former patients, encouraged us by describing my condition as potentially curable.  The results of an MRI scan done only eight days after my biopsy might not be reliable, he said, because of bruising from the biopsy.  He believed that by performing a radical prostatectomy he could ensure that I would die of something other than prostate cancer.  We agreed a provisional date for the operation.

The very next day, our new-found optimism was dashed.  The oncologist recommended by my urologist advised that there was only a 20% chance that the biopsy had confounded the MRI scan.  It was unlikely that my cancer could be treated successfully by surgery.  I would almost certainly need radiotherapy afterwards.  It was preferable to avoid having two treatments, and the greater risk of the combined side-effects to my quality of life.  Better, he said, to opt for 3-6 months of hormone treatment, an intensive course of radiotherapy, and then 3 more years of hormones.  Meanwhile, there was a 10% chance that the cancer had already spread to my bones.  In that case, surgery would be pointless.  I should therefore have an early bone scan.  If that were clear and I remained keen on the surgical route, I should also first wait four weeks and have another MRI to see whether the biopsy had indeed clouded the results of the first one.

A scan four days later confirmed that my bones were clear.  My oncologist stood by his earlier advice.  After again consulting my surgeon, we decided to postpone the operation while I had another MRI.  With my oncologist’s assent, we also sought a further opinion from a second oncologist.  She advised that we should indeed repeat the MRI but that, even on the basis of the first one, surgery was a realistic option.  I might well need follow-up hormones and radiotherapy, but this would be a lower dose, for a shorter period and more precisely targeted than if I relied on hormones and radiotherapy alone.

The second MRI showed a significantly better picture.  My surgeon and my new oncologist agreed that surgery was definitely the best first treatment.  I finally underwent the operation just one week after the date we had first set, a total of just six weeks since we had first learned of the cancer  -  though it seemed more like six months!

The operation went smoothly and was essentially a great success.  I stayed in hospital ten days, not five as planned, because of a problem with my wound.  The original clips were taken out after just four days, and the wound had twice to be re-stitched before it fully healed.  Much more important, the biopsy of the excised material      broadly confirmed my surgeon’s assessment of the spread of the cancer.  There had been a sizeable tumour in my prostate, which was beginning to invade the fat and base of my left seminal vesicle; but all the margins were clear except in one very small area.  Crucially, my PSA dropped to 2.0 after two weeks (when my catheter was removed), to 0.09 after three, and to <0.05 (or “negligible”) after six.

At the time of writing, exactly two months after my operation, I am stronger by the day and am told I am looking better than I have for years.  That may also have something to do with my retirement.  But I am certainly feeling very well.  With the help of regular pelvic floor exercises, my continence is virtually back to 100%.  I am (as expected) biologically impotent; but with expert advice and medication am hopeful of soon being able to resume sexual activity.

I am in no doubt that surgery was for me the right first course.  The key outstanding question, to be discussed further with my oncologist after another couple of months, is whether to have early radiotherapy despite my low PSA.  I am assured that there is no rush to decide, provided that I continue with PSA tests every two months.  Although it is far too early to forecast whether my cancer will recur, both my surgeon and my oncologist are optimistic about my long-term future.

Partly for the benefit of any others in a similar position, I draw the following lessons from my experience so far:

-  There is no substitute for regular PSA tests.  In retrospect, the gap between October 2003 and January 2006 was too long.

-  It is essential to have full confidence in one’s consultants.  Anyone uncomfortable about the advice he is receiving should not hesitate to seek another opinion.

-  After a difficult start, I was glad to be able obtain all the expert advice I needed under one roof.

-  Even if the cancer is thought to have spread outside the prostate, it is worth seeking advice from an experienced surgeon before ruling out surgery.

-  During the initial diagnosis period, there should be a gap of at least four weeks between a biopsy and an MRI scan.

-  My wife has been an invaluable support throughout.  She has accompanied me to all my consultations, keeping separate notes, and in the run-up to the operation and the first weeks after it she dealt with almost all the enquiries from our family and friends.  I noted earlier how glad we were to have been open with them from the start about my condition.

-  Thanks to research and improved techniques, and although the first diagnosis is obviously a shock, prostate cancer is now eminently treatable if caught in time.

Bruce Dinwiddy
10 May 2006

Back to top