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Coping : Stories : Bob

Bob, 60 - Brachytherapy

I was a fit if slightly overweight 60 years young, still commuting daily to London, when not travelling round the country or abroad on business as a mediator.  Having always been interested in medico-legal matters, I decided not to ignore a marginal tendency not to empty my bladder completely.  But I had no night visits to the loo or blood in the urine or anything sinister.  A less curious person might well have ignored it.

I visited my GP in mid July 2005.  He could feel no abnormality on a rectal examination (best to relax for these – you will have quite a few!) He suggested a blood test.  A week later this revealed a PSA of 6.8 instead of my age norm of about 4, so he referred me to a urological surgeon, chosen really on the basis of who was not away and could fit me in within a few days.  I did no prior research on who was the best consultant to see.  He turned out to be a relatively young consultant who had studied in Australia and France, investigating various treatment methods.  He seemed energetic, experienced and reliable.  He too could feel nothing, but suggested a further PSA test to check any trend.  I ignored it during a week’s work in Italy, but learned in early September that my PSA was now 8.6.  My wife came with me two weeks later to see the surgeon.  He was surprised at the rise, which he felt might indicate infection rather than cancer.   But he recommended a biopsy, fortunately covered (like all my diagnosis and treatment) by a company health insurance.

The biopsy was the first major intrusive activity I experienced. While it was not a pleasant experience – digital rectal examinations are not nice either, though brief  - it was more uncomfortable than painful.  I was given an antibiotic injection and a local anaesthetic.  The ultrasound probe felt like more like a fat thumb than a finger, and I could hear rather than feel six needles being fired through the rectal wall into the prostate.  The radiologist said he could see nothing sinister on the ultrasound screen, so I set off on a sponsored walk along the South Downs Way in an optimistic mood.

When I saw my surgeon on 4th October, he was amused at my description of the ultrasound probe as “interesting”, but then came the news that I “had a problem”.  Two cores were positive, with a Gleason score of 6 (3+3).  He explained what this meant and indicated that if I had been older, he would almost certainly have suggested a policy of watchful waiting, checking the PSA score regularly before deciding whether to intervene.  But I was (for this purpose anyway) too young to leave it, despite a life expectancy of 12 years even without intervening now.  He outlined the main choices - surgery to remove the prostate, conformal
3-D external beam radiotherapy and brachytherapy.  Wisely, he insisted that I should see other consultants in each field before making a decision, as my immediate inclination was to have surgery.  I had coped well with surgery twice before (an emergency appendix 15 years previously and, a year later, a non-keyhole gall-bladder removal) and while I did not feel any immediate need to have the cancerous prostate dropped in a bucket, I could see that this might produce an attractively certain outcome.  He warned me of the risks of incontinence (low) and impotence (relatively high) following surgery, which gave me some pause.

So despite feeling entirely fit, with no pain or other symptoms, I had cancer, graded T1C.  It seemed rather unreal and bizarre.  I was considerably encouraged that it had been caught early and was said to be curable.  Indeed I was told that the cancer was far too early for it to have caused the minimal symptoms that had led me start out on the diagnostic trail.  I felt very lucky.  I felt surprisingly calm about the diagnosis.  It was something to grapple with, but not in any panicky way.  It did not feel like a death sentence, and never has since the diagnosis was made, despite the fact that 10,000 men die every year from it, and 27,000 are diagnosed.  I had probably been nearer to death when my appendix burst over 20 years previously, and was scarcely arousable after the operation because (unknown to me) I was allergic to an anaesthetic agent.  

I had the unpleasant task of phoning my wife, who was working abroad, with the news of my cancer, and discussed it all with her as soon as she returned home.  She had a stake in my potency, after all, but much more in my survival.  Reassured that no urgent decision was needed because the cancer was slow-growing, we went off on a pre-planned holiday in Venezuela for much of October, postponing further discussions till then, and having sent off for the Prostate Cancer Charity’s toolkit to read on our return.

Choosing the right treatment

Picking the treatment turned out to be the hardest part of the whole experience.  The PCC Tool-kit provided an excellent start, allowing me to chart the suitability and side-effects of each modality. We both attended each consultation, starting with the top local oncologist, who would deliver external beam radiotherapy if I chose this.  He devoted over an hour to advising us, all recorded on a tape which he gave me to revisit and think through at leisure, a really useful idea.  We then returned to my surgeon, and finally had two sessions with the brachytherapy unit in Guildford, first with the medical oncologist Dr.Laing (who ordered another PSA, which turned out to be 9.25) and the urologist Professor Langley, who checked my spectacularly full urinary flow and bladder evacuation by ultrasound, and again found nothing palpable in a rectal examination.  Guildford sent me a booklet and video to introduce me to their approach.  I also read two American books, The Prostate Book: an Owner’s Manual (published in 2005) by Peter Scardino, a urological surgeon, and Prostate Cancer: a Survivor’s Guide (first published in 1996 and revised in 2003) by Don Kaltenbach.  These were both very informative, but somewhat evangelical.

The difference in approach between these two books highlighted my difficulties in deciding what was best.  Scardino is a surgeon and surgeons clearly want to do surgery, and while they may be careful not to decide for you, their underlying loyalty to their craft shines out.  They have been curing patients of this cancer by radical prostatectomy for many years, and claim improvements in coping with its unpleasant side-effects, minimising incontinence and attempting nerve sparing to preserve potency if possible.  Their track record is clear and published, and the techniques settled.  However, Kaltenbach was a recipient and is now a supporter of brachytherapy, a much more recent mode of treatment, with correspondingly less track record.  He was relieved not to have had to face surgery with its potential for complications and side-effects.  Brachytherapy in 1990 seemed to have cured him, and he now works as an adviser and administrator at a cancer centre.  Scardino’s book was well known to my surgeon, but interestingly not to one of my oncologists, to whom I referred a passage about the suggested late onset of impotence after brachytherapy.

I did not go trawling on the internet, as I feared that this might risk comparing apples with oranges, and anyway it would not be a computer that treated me.  I didn’t seek out fellow sufferers to learn from their experiences, though it was amazing how often a casual conversation with people led them to tell me that they or friends known to them had had prostate cancer treated successfully.  I had the good fortune to have a brother-in-law who had just retired as a consultant leukaemia physician, and while prostate cancer is a very different condition, he helped me to understand the language and the issues, albeit as one who is instinctively cautious about surgery. 

The problem is that the research statistics seem to show that outcomes for five year survival rates are equally good.  My problem, as someone with a 12 year survival anyway even without treatment (though doubtless the last few untreated years would be less than pleasant), was: how could I best achieve a cure, and thus an effectively normal life expectancy?  None of my consultants was prepared to say that their course of treatment was the better than any other.  My local oncologist thought I would be a good candidate for brachytherapy, and as it seemed that external beam therapy could damage the rectum which would be better avoided, my choice rapidly narrowed down to surgical prostatectomy or (if I was suitable) brachytherapy.  My local surgeon identified Scardino as anti-brachytherapy, certainly more than he himself was, but I had a sense that surgical pride lurked somewhere beneath the surface.  Ultimately I was impressed that Professor Langley, the Guildford urologist, who had done many prostatectomies in his professional life, had turned to brachytherapy as a way of offering a less invasive procedure to patients, with fewer side-effects and entirely comparable cure rates.

  I could ignore whether the cancer had already spread, having been told more than once that this is untraceable through imaging.  I also decided to ignore all inevitable short-term side effects, as it was only the long-term ones which mattered.  So the choice boiled down to whether or not I preferred to have the prostate removed and analysed, allowing the precise extent of the cancer to be known.  If it often happened that full analysis after surgical removal  revealed that the standard pre-operative assessments - rectal examination, ultrasound and PSA readings – had under-estimated the cancer, for instance requiring that immediate further radiotherapy was needed to improve chances of a cure, this might tip the balance in favour of surgery.  So I asked my local surgeon how many times he had discovered that a patient pre-assessed as T1C had been found to be T3 after surgery, and thus perhaps unsuited for brachytherapy.  He gave a figure of 3 out of his last 30 cases, so 90% were likely to be accurately predicted, quite a favourable proportion. 

My Guildford surgeon reassured me on this point and was emphatic that the UK brachytherapy results were showing success comparable rates to the longer-standing US results.  I also asked about my PSA rate of increase (a slightly slower rate since my first test, though the reading was still twice the norm for my age) and he offered me the opportunity to stem the growth of the cancer immediately by starting a course of hormone therapy, though warning me that this seemed likelier to inhibit potency than if I did not take this.  Fortunately, an early appointment for brachytherapy was offered if I chose that option, so I decided not to start the hormone treatment.  The other issue was that all the side effects of surgery inevitably kick in immediately – both incontinence (though this seemed unlikely in any modality) and almost the inevitable impotence.  This would then take up to two years to recover, if at all.  The reverse seemed to be true of brachytherapy, with no immediate change likely, but perhaps with impotence developing over the following months.  Again there was very little risk of incontinence, perhaps not to be recovered, though amenable to therapy such as Viagra or Cialis.  Plenty of men appeared to recover full potency, and my wife and I would have to resign ourselves to whatever that outcome proved to be, always keeping the best chance of cure as the most important objective.

I found myself as a non-expert having to make the final decision for myself, based on the information (but never firm advice) given to me by experts.  Understandably, they wanted it to be my choice, because none of them could really guarantee a cure in the event of early undetectable spread, nor could they predict or prevent variable side effects.  I had to take on those risks for myself, with my consent based on lots of information.  This was a little unnerving. 

With the balance so close, other considerations like the general risks inherent in major surgery under deep anaesthesia, such as infection and embolism, came into the equation.  So after just over two months of advice and deliberation, I decided, with my wife’s full support, to choose brachytherapy. Why?  Perhaps I felt a certain confidence in those who would be performing it at Guildford; a sense of its being a less inherently heroic intervention, even if this came at the price of a little less certainty as to the extent of the cancer; and trust that with a T1C cancer, with a final December PSA of 9.2 and a Gleason score of 6, and no significant flow problems, I was likely to be in the 90% who would turn out to be suitable for brachytherapy.  There was still uncertainty as to the rightness of the decision, but I had done the best I could to weigh up all the factors and decided to make it and live with it.  I marked my decision by starting on a pre-procedure course of Flowmax, the only side effects of which seems to have been a runny nose and slight chestiness.



The nest stage was to have a Stage 1 assessment for the brachytherapy as a day patient in Guildford.  After a day at home enjoying the delights of a laxative and starvation from midday onwards, it was a relief to present myself at the Day Surgery Centre on 11th January 2006 to get the procedure under way.  I had a light general anaesthetic for about 30 minutes while an ultrasound probe mapped my prostate for computer modelling purposes.  Professor Langley did this himself and spoke to me both before and after the procedure.  I woke in the recovery room, having leaked somewhat from penis and anus and feeling a little nauseous, but this soon passed.  I was able to leave after another hour or so.  Far from encountering acute urinary retention on the way home, I found myself suffering quite the reverse - acute urinary production! - a little painfully at first as a result of the catheter inserted and removed while asleep.  I learned later that day that my prostate was suitably sized and located to let me proceed to the second stage, but that not all my fellow four or five patients got through that day.  So that assessment of prostate size and position might have revealed that all my agonising over what procedure to choose was wasted, with surgery ending up as the only real option.  Feeling lucky on that, I spent the next 36 hours feeling slightly wobbly, but with less frequent urine and little bowel activity.

Normal function soon resumed, though, and I worked a normal week or so until my second starvation day prior to the main brachytherapy procedure on 25th January 2006.  24th January happened to be my 61st birthday, and when my office colleagues scribbled the usual “Have a wonderful day” on the communal birthday card, they clearly had not realised that a dose of Picolax and no food from a light lunch onwards would rather dampen the celebrations for a while!

The treatment day

It was 25th January, the day of my treatment.  Breakfast consisted of a glass of ginger ale at about 7.30.  I finished packing and we drove to Guildford to arrive at shortly before the appointed time, 11.30 am.  I was shown straight to my room, where the brachytherapy nurse specialist Donna came to talk me through the procedure, complete the consent form and check any questions.  I was due to go down at about 3.30, so we resigned ourselves to a quiet few hours reading and watching the minimal delights of daytime TV.  I ordered some soup and sandwiches for later (no three course meal).  I found myself with wristband, hospital gown, ECG and vital signs checked and ready to roll by 3.00pm.  The porter and my nurse wheeled me through from the Nuffield to the neighbouring St. Luke’s Centre and into the brachytherapy suite.  I met Donna, the nurse specialist, and my anaesthetist there, who had dealt with the volume study two weeks before, and who gave me a pre-med and inserted a cannula into the back of my left hand without any pain at all, an expert job.  I also had a brief word with Dr. Laing, my oncologist.  I then strolled with him into the operating theatre (no room to swing a bed in there) and climbed onto the table.  I was rapidly out and came round in the recovery room about 50 minutes later, a bit woozy but OK and able to hold a moderately coherent conversation with the anaesthetic assistants. 


The first 24 hours

I was wheeled back to my Nuffield room with an icepack between my legs, but surprisingly little discomfort, and certainly nothing that could be described as pain.  The catheter felt a bit uncomfortable, but once the first urine had passed, it was relaxing to pee whenever I felt like it without having to get up.  I had a fluid drip set up, and began the task of imbibing large quantities of water to keep the system in good working order.  My wife was there and stayed with me until after supper of soup and sandwiches, antibiotic and anti-inflammatory tablets, but no coffee (not even decaf) or tea.  Professor Langley called in to say that all had gone well and that the seeds went in satisfactorily.  He said in a telling phrase, “Remember that your treatment has only just started,” and we pondered the significance behind that.  I felt fine by now and read and listened to music and watched TV until late, as I needed my drip changed at 11.30pm. Regular checks of blood-pressure proved OK, and I declined pain-killers from the evening drugs round, as I really didn’t feel any pain.

I did not have a particularly good first night in hospital, as the drip clicked and wheezed every ten seconds or so, and I didn’t have the heart or the energy to ask the night nurse whether the noise monitor could be turned off.  I dozed and probably slept more than I thought.

Vital signs were checked at 6.oo am, more fluids drunk, then breakfast at last.  My drip was then taken down (but the cannula left in) before I was taken in a wheelchair down to the CT scanner at 8.45 to check the position of the seed implants.  This was a five minute job, with an injection of contrast medium into my catheter valve which was painless, and a series of deep breaths under the scanner, then back to the ward for removal of first the catheter (not entirely pleasant for a second or two) and then the cannula.  I was then free to dress and move around at last.  The fun then started with getting the fluid right: drink enough but not too much, pee as often as you can and having the quantity in the bladder checked by mobile ultrasound each time.  After several efforts, I produced a triumphant 350mls which emptied the bladder completely  - a real pre-operative performance.  I had passed the test, so I was awarded a pack of pills to take at home (though I declined the painkillers as there simply wasn’t any pain), a letter and card to spare embarrassment at airport security, a final word with Donna and Dr. Laing, and we were away at 2.oopm.

Back home

I slept well, getting up once at around 5am, and dropping off again.  Daytime peeing was quite frequent and of variable comfort and productivity.  The bowels did not move for a couple of days.  I had a good appetite.  I had slight tenderness in the perineum and a sense of discomfort in the anus, where after all quite a large probe had been inserted during the procedure.  Sitting on soft cushions helped.  The second night was harder, with difficulty starting, maintaining flow and finishing.  Opening bowels became easier and more frequent and this helped improve the urinary flow.  I noticed a plum-coloured bruise developing up the midline of the scrotum to the back of the penis.  This became really spectacular over the two weeks or so, at its worst a deep blackish-purple all over a rather leathery scrotum and penis, before it faded through purple to blue to yellow and away after several weeks.  It was never painful and never required any treatment.

Normal activity was resumed gingerly, and this included gentle intercourse with a condom four days after the operation, though with no ejaculation.  Peeing continued to fluctuat in efficiency over the following days, with some blood to be seen, which I had been told was normal.  Some nights were very disturbed, and some I slept through.  My worst night was 12 days after the procedure, with frequent trips at night and great difficulty in passing.  The next day I rang the unit and Professor Langley suggested taking an extra Flowmax daily, so one in the morning and one at night, which seemed to help.

I travelled to deliver a day’s training a week after the procedure, but otherwise stayed at home for the first two weeks or so, writing, e-mailing and telephoning.


Post-operative appointments

The pattern of variable performance continued, up some nights several times, occasionally sleeping through.  I managed intercourse with a condom several times with no great difficulty, though some blood in the ejaculate as there still was in my urine for a week or so.  I tended to pee and open bowels more frequently than usual.  Peeing could sometimes be very difficult with inability to pump urine out in the usual manner.  I first slept through the night a week after the procedure, but this was followed a further week later by my worst night for getting up and having difficulty peeing, after which Professor Langley agreed that I should double the Flowmax to one morning and one evening pill. This seemed to help and I returned to work 2 weeks after the operation.

The review was encouraging.  I kept on two Flowmax a day and began to forget about the condition, reminded only by the varying ease and comfort of going to the lavatory.  I had a blood test a week before my first full review, which revealed a PSA of 4.55, nearly below the norm for my age and half the highest pre-procedure reading.  Professor Langley reduced me to one evening Flowmax per day, saying that I was “on track for a cure”.  Things seemed to improve greatly during the net three months, though it was rare for me to have comfortable peeing and bowel movements together. 

About three weeks before my second review I rang to ask if I should try to do without Flowmax, and Professor Langley said I could for a week before seeing him.  My PSA was again checked before seeing him and found this time to be 2.99, not quite halved again, and again seen to be on course.


My overall impressions

This has gone much better than I could have hoped for, with a mildly intrusive experience in hospital, no pain, no more than 24 hours in at any time and a swift perceived recovery period, bearing in mind that I have never felt ill!  Seven months on I feel absolutely fine and have played some cricket during the summer and worked in Pakistan twice and Spain.   After the first two weeks my life has been largely normal and it is only these last few weeks in which the tedium of abnormal patters in emptying bladder and bowels has begun to become tedious.  I hope this just the last workings of the brachytherapy seeds dosing my errant prostate with the last bits of radioactivity before it falls inert and quiet and I can get on with normal life having finished the treatment which was started last January and the long trail from first referral to my GP just over a year ago.
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