Professor D. Mark Cato’s history re prostate cancer and associated operations.

In 1999 I was diagnosed with prostate cancer after consideration of the alternatives and on the advice of the urologist I underwent a retropubic prostatectomy in May 1999. I came to this decision after reading a one page pamphlet entitled “You and Your Prostate”, published by The Continence Foundation.

The consultant urologist, in discussing the procedure and the possible after effects, mentioned that I could be incontinent and also suffer from some erectile disfunction immediately following the operation. However, I was assured both conditions could be temporary and that there was every chance of a full recovery after a reasonable period. This was borne out by the literature I was given. The operation was carried out at the BUPA Lea Hospital in Impington, Cambridge lasting 5 hours was apparently a difficult one during which, according to all the nerves on the right of the bladder were removed and around half or so from the left.

I spent 5(?) days in hospital and recovered remarkably quickly except that immediately after the operation, when I got to my feet 2/3 days later I was 100% incontinent. I was fitted with a urethral catheter and leg bag. I was referred to the incontinence clinic at the BUPA Lea where I was put onto pelvic floor exercises. I have done these exercises conscientiously every single day since that time. I was also given a small DIY electrical device which, after a week or two, I applied to the pelvic muscle whilst watching television in the evenings. As a result mainly, I believe, of the exercises, I largely got the incontinence problem under control.

Since the operation however, I have been totally impotent. I have tried all the normal remedies without success. Had I been told of the possibility of total impotence, in particular total loss of erectile function and sensitivity I might well have opted for an alternative treatment or, at least, considered the alternatives in more detail. For example, I was very surprised to observe the loss of length of my penis following the prostatectemy. The surgeon’s comment was that “there would be some inevitable foreshortening!” Perhaps such a traumatic result should have been made more of in the pre-op discussions? (but see below for explanation for this loss of length.)

Returning however to the incontinence problem. I managed to dispense with the leg bags by late 2001 and then relied on incontinence pads. Even these were dispensed with by mid 2002 except when I undertook strenuous exercise, swinging a golf club for example. After a round I would need to change my pants and use a fresh pad although the ‘leakage’ would be minimal, at a guess no more than 25 mls. At night however I was able to sleep without pants or any protection with no problem except for the occasional very minor leak. So at mid-Nov. 2002 I was 95% continent.

During a routine visit to check on my progress I discussed with my urologist the inconvenience of the leakage when active and he said that he could probably fix that by inserting some silcone around the neck of the bladder. I agreed to undergo this procedure and was admitted to hospital on Tuesday 12 November 2002. I was given a general anaesthetic and the operation carried out in the late afternoon during which a supra-pelvic catheter was fitted. This catheter was removed after lunch the following day and I left.

On Thursday 14 November I attended a meeting in London. However, before I left home I found I was leaking badly and in fact had to change my trousers three times during the day.

In order to cope I fitted an external sheath and a second leg bag. 125mls of urine was discharged into this bag over 9 hours. I telephoned and was readmitted to the hospital on Friday 15 November and the procedure was repeated late afternoon , i.e. I was fitted with another supra-pubic catheter. This time it was decided to leave it in for a while. On Saturday I dressed to leave. I got no further than 50 yards or so down the corridor and found my underpants wet.

I was asked to return to the Ward where, after consultation by telephone, I was re-admitted. I continued to leak urethrally and stayed in hospital until Sunday p.m. having been prescribed oxybutynin (5mg). With agreement of the surgeon I then left the hospital with this catheter still in place.

Since then I have continued to leak urethrally, up to 300/400 mls of urine daily as well as discharging significant quantities of urine into the supra-pelvic bag. For example, I went to a reception in London on 21 Nov. and between 4.30p.m and 10.30 p.m I discharged 325 mls of urine into the urethral bag through an external sheath.

The surgeon admitted that he was completely foxed and does not know what has caused the problem. He says that he has carried out this procedure on over 40 occasions with a high degree of success. At no time during the short discussion on this procedure was it even hinted at that I could find myself in a worse condition post op. It was always let’s try it, it has certainly worked in the past.

He has now referred me back to the incontinence clinic for further examination and possible electrical stimulus. When I spoke to him on the evening of 20 November he admitted that he was totally mystified and did not know how long this condition would last, weeks perhaps or maybe months. He said that I might ultimately have to have an artificial sphinctor fitted.

Friday 21 Nov. It was agreed that I would spend today in the Evelyn Hospital day care unit during which time he would carry out tests to try to get to the bottom of the problem. This I did but when he observed the total lack of control when the stopper was inserted in the supra pubic bag he reiterated his total perplexity and agreed that I should take a second opinion from another leading urololgist. He also made an appointment for me to meet with the incontinence nurse the following Monday 25 Nov. for further treatment.

Sat 23 Nov. Developed acid build up similar to that which I suffered immediately following the prostectemy in 1999. Took Mebeverine tablets (135 mg), little relief. During the night took Gaviscon liquid. Condition persisted throughout the next day. Typically soaked two incontinence pads during the night. Discomfort in stomach – distended and sore.

There is a sore point , 2″ or so to the left of the supra pubic catheter which seems to flare up from time time. It feels muscular. Could this have been damaged in the recent silicone operation?

Constant feeling of need to pee without being able to produce anything normally. He explains this is the catheter pressing on the bladder. It is however a distressing side effect.

Sun. 24 Nov. Had to get out and try to play golf. However, was concerned about the supa pubic catheter. Would the golf swing aggravate it? Managed 18 holes without too much discomfort. However, during the 3/ 3½ hours play not one single drop of urine found its way into the leg bag from the supra pubic catheter. All was discharged urethrally into the incontinence nappy – it was soaked. As was a second one 3 hours later. Acid build up persists. Have stopped taking the oxbutynin tablets.

Had a better night. The Gaviscon seemed to do the trick with the acid build up. Still find sleeping with a catheter restrictive and can only have one bed bag (otherwise I could not turn over at all!) so it is pants and a nappy which need changing during the night. Also the most distressing symptom of this present situation remains the pressure on the bladder indicating the need to pee but being unable to do so.

Mon. 25 Nov. Supposed to be in Paris for a meeting at the ICC. Cannot face this in my present condition. Consultation with incontinence nurse at the Evelyn Hospital, Cambridge. JD said that she had been amazed at how well I had done in getting myself continent after the op, 3 years ago, far better than she had honestly expected in view of my condition immediately after. As to my present relapse , she had seen one previous such case where a patient had rejected the silicone but this was very rare.

She checked my muscular reaction and agreed that those between the scrotum and rectum were very strong and working well but the muscles at the point where the penis meet the pubis were weak and fatigued. As a result the nurse modified the pelvic floor exercises which I had previously done every day for the past 3 years or so. She also declined to undertake any other treatment until the second opinion had been received.

Tues. 26 Nov. Arbitration meeting with parties in Ipswich. With two leg bags and the pelvic truss – very uncomfortable! Left home at 9.30 a.m., returned 5.00 p.m. – 4¼ hrs sitting at meeting; 3½ hrs driving. Pubic bag approx. 900 mls and urethral sheath 175mls.

Had a bad night. The muscular pain in my stomach nagged.

Wed.27 Nov

Worked all day in office. No real problems.

Thurs.28 Nov.

Plugged off supra-pubic bag at in preparation for meeting with urologist for second opinion. Travelling in and a long walk down Harley Street discharged 578 mls into sheath leg bag by 11.00. The urlogist referred me across the road to his colleague in Harley Street, another world expert in urology, apparently. He took a videocystourethrogram with urinary flow rate. He reported back and in a late afternoon consultation they gave me their joint opinion. In a nutshell, the bladder muscles were weak but more serious was the sphinctor muscle was very faint and hardly working. In his opinion it had been bruised in the silicone op. – he said that it was a pity that this was ever done in view of the degree of continence I had previously achieved. As to prognosis he was honest enough to say that he really did not know. The muscle may recover quickly, slowly or not at all. I should ask for a regime of exercises increasing progressively. With these exercises there should be substantial improvement within 2 months or so, if there was to be any improvement. If not then probably the solution would be an artificial sphinctor and in this regard he referred me to “the best man in the business” at the London Bridge Hospital.

Consultation at London Bridge Hospital 16th December 2002.

I presented a record of my fluid intake and output over the past few days. The surgeon observed that I was leaking something in the region of 450 mlls when I was active. This, he suggested, was totally unacceptable. It should be less than 50 mls per day for an active life.

The bio-plastic insert operation was carried out on 12 November. He suggested that this should have recovered within 6/8 weeks, the bruising should have subsided and I should return to the same level of continence as I was before the implant. He suggests waiting until the beginning of January to see if there is any dramatic improvement if not he recommends the insertion of an artificial sphincter.

This device provides reasonable continence; it is not perfect but I should be able to lead an active life without either a sheath or a nappy. Leakage tends to occur with prolonged coughing, laughing or sneezing.

The surgeon has apparently fitted over 600 of these devices and 150 of them have lasted over ten years. The device that he recommends has been in use since 1984.

I am to contact the consulting rooms no later than 15 January, if there is no significant improvement and I am to be admitted for an operation 4 February. One week before I am to have a urine test at the local surgery to ensure that the urine is sterile. This to be followed up on Friday before admission for a second sterility test if there is a problem there is still sufficient time therefore to undertake a course of antibiotics. The time to be spent in hospital is 5/6 days as it is imperative that they monitor the insert to ensure that there is no infection.

Interestingly enough this consultant said that he had heard of failures of the bio plastic insert in other patients and seemed surprised that my own surgeon had not been aware of this possibility. As I explained if I had been given the slightest inkling that I could have regrets from the very good level of recovery that I may I would not have contemplated the latest surgery.

This consultant confirmed that it was irreversible once the bio plastic is in place then there is nothing that can be done to remove it.

We also discussed erectile dysfunction and the problem that I have with a sheath on what is a very reduced length Willy. It comes off regularly, with the inevitable outcome of soaked trousers and the embarrassment that engenders. Indeed it did so a day or two before my consultation, at an important meeting in London. This consultant explained that the dramatic effect of the operation has the effect of reducing the length of the penis. It is not, as I was led to believe, the shortening of the urether.

(The same problem occurred at a golf match on the day after the consultation when the sheath came off on the first hole and I had to play the other 17 with a handkerchief stuffed down my pants)

The outcome of the meeting at LBH was quite simply that I had 2 options if my daily leakage did not fall to no more than 50mls. I could spend the rest of my life in nappies/leg bags etc. or have the artificial urinary sphinctor (‘the device’) fitted. He said that any healing from the Bioplastique operation should have occurred no later than 6/8 weeks after the operation i.e by the middle of January by which time I should be back to where I was prior to that procedure, i.e 95% continent. If not then I could not expect any further improvement.

I monitored my daily input/leakage over the following weeks and it became obvious by the middle of Jan. that I was not going to improve and that my daily leakage was running at about 450 mls, which for anyone leading my sort of active life was unacceptable so I decided to go ahead with the op.

I booked into the London Bridge Hospital (LBH) on 3 Feb. and was operated on 4th. The following day the urethral catheter was removed and I attempted to void my bladder naturally over the next few hours without success, during which time I was in severe discomfort. At the end of which I was recatheterised. The suregon suggested that there may be some residual swelling and he would leave the catheter in until the following Monday in order to allow the max. time for any swelling to subside.

I was readmitted to LBH on the Monday 10 February and the catheter was removed. I then passed another full day of severe discomfort unable to void naturally at the end of which I was recatheterised. The catheter was removed the following day and the result was as before, a total failure to void naturally. This process continued on Tues., Wed, and Thurs. each day suffering excruciating discomfort. The surgeon decided to leave the catheter until the following Monday 17 Feb. when he would try once more.

I was readmitted to LBH on 17 Feb. The catheter was removed once more with the same result. I then pleaded with the surgeon to insert a supra-pubic catheter to relieve the terror I suffered each time the urethral catheter was removed. I underwent this procedure on 18 Feb. and the surgeon carried out an inspection to try to ascertain the problem.

He discovered that the device had been activated, or as he said, I had activated it! How this was possible I could not imagine as I had no idea how the device was activated. All I knew was that I had what appeared to be another testicle which was clearly part of the device.

I certainly did not squeeze this device but as my scrotum was the size of a grapefruit as a result of the device operation, I could only summise that in moving about in bed I had somehow squashed it and set it off! I had no idea that this was possible nor indeed had been warned of this possibility. However, it had happened and this explained the impossibility of voiding naturally as the AUS had clamped shut the urethra.

It was following the insertion of this supra-pubic catheter the surgeon informed me of the activation of the device and told me that serious damage had been caused to the lining of the urethra and that the wall was so thin that there was a strong possibility that this would give way altogether. (I gathered from another Australian surgeon friend that it was the constantly inflated device which had been the most probable cause of the damage, – not as I had first suspected the constant recatheterisation – not unless this recatheterisation had been particularly difficult and bloody.

Constant inflation would cause pressure on the urethra and deprive its blood supply and lead to death of tissue ie ischaemic necrosis) The surgeon said that the supra-pubic catheter would have to remain in place until 17 March and in the meantime I should pray that the damaged urethra healed. I returned home on 19 Feb. with the supra-pubic catheter in place and leaking urine and a little blood thro. my urthera.

This meant wearing not only a leg bag during the day ( and a bed bag at night) but also a nappy.

I was instructed to take things very gently for the following month – no golf or daily exercises which I had done for the past 20 years – and pray that the urethra healed in the meantime. I gathered that if the lining of the urethra did go then I could be faced with the possibility of another operation to repair it – an urethral-plasti (?). There was also the possibility that the device would have to be removed and reinserted in a further operation, with as the surgeon said, added complications (whatever that means).

I heard today (20 Feb). that the surgeon wants me in LBH on 18 Mar. when he will clamp off the supra-pubic catheter and activate the device and I am to stay in hospital for 24 hours for observation. If on 18th. the scarring around the device is still sore he will delay the process for a further week.

In the meantime, the surgeon is out of the country until 17th. Mar. so I have had to place myself back under the urologist who carried out the failed Bioplastique procedure – who has been particularly helpful and sympathetic. He even rang me out of the blue on 21 Feb. to find out how I was and is happy for me to telephone him at any time, including at home in the evenings, should I become concerned. Incidentally, he expressed the view that, given a bit of luck, he saw no reason why my urthera should not heal completely with no lasting damage.

In the event the hospitalisation was put off until 18 March. I was admitted around midday and shortly after the surgeon activated the device than plugged off the supra-pubic catheter allowing the bladder to fill. I managed to void it, using the device around one hour later. The surgeon visited me two or three times during the day to check on progress and seemed satisfied when he left in the early evening.

I managed to “go”, a couple of times during the night and then the following morning the catheter was removed and I was discharged. At the time of writing I have been home for 11 days and successfully used the device. As my dear daughter said so succinctly, hopefully home and dry!

I have played golf twice and kept dry apart from a small leakage. Similarly, the device appears to work well under all other conditions with just the very smallest amount of occasional leakage. I am getting used to it but am still not 100% comfortable in using it.

The above was written on 19 March 2003 before I was diagnosed with Motor Neorone Disease in April 2008.

The AUS functioned splendidly from the very beginning and was very easy to operate. The control pump being in the scrotum was held with the left hand and the right hand used to squeeze the tip, thus opening the device to allow the bladder to empty. As it did so it filled up a small reservoir which subsequently blocked off the device until the operation was repeated when the bladder was once more full.

All went well until I was diagnosed with motor neurone disease in early 2008. Unfortunately it started in my hands which rapidly degenerated and became very weak making it difficult for me to locate and operate the control pump. As a result I realised I would need to find some other way of operating this device without my hands.

I was fortunate in establishing a good relationship with the mechanical engineering division at Addenbrookes Hospital where we worked on a number of gadgets to assist me to lead a near normal life. For example, I designed a remote-controlled electronic device, located on a thigh strap, to operate the control pump. In working with the engineers, in developing this device, I managed, through clumsy handling, to knock out the AUS altogether. In other words, I found that it was permanently open. It was a weekend and therefore there was no prospect of seeing my London neurologist to correct the device.

I went to bed that night, having put a rubber sheet on the bed and wearing a nappy. I was pleasantly surprised in the morning to find that I had not leaked, as I thought I would. The following day I wore normal underclothes with an incontinence pad but again, no significant leakage. It seems that a minor miracle had occurred. The subsequent medical explanation was that the artificial urinary sphincter was acting, in conjunction with my own pelvic muscles, and retaining the urine.

As I write this, this state of affairs has now prevailed for 7 months and I pray will continue. The point being that my hands are so weak now that there is no way I could operate the control pump. Without this miracle I simply would not be able to venture far from home, as I would require assistance to go to the lavatory. There are clearly limits on what you can asked even your best friends to do for you. I can see the headlines now: “Professor arrested after accosting stranger in public lavatory requesting them to squeeze his ….”

If an artificial muscle can be created this way (by accident) for me what about developing one that can be fitted deliberately for the many other sufferers from incontinence? Amazingly, to me in any event, neither my Cambridge urologist nor the one in London, have shown the slightest interest in this idea.

Maybe I am completely mad and I acknowledge I certainly lack the relevant medical knowledge to know whether such a thing is possible, but before I abandon the idea as unworkable, perhaps someone would please tell me why it would not work.

Professor D. Mark Cato

30 June 2009

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