After a couple of postponements I will now be seeing Mr Singh on Wednesday 26th of this month, October, at 11.30 and Dr Owen, the radiotherapist who is conducting the trial I’ve been invited to join, at 4.00 pm on the 3rd November. (The Radiotherapy and Androgen Deprivation in Combination After Local Surgery trial, conducted by the Medical Research Council, and the Radiotherapy—Adjuvant Versus Early Salvage (RAVES) trial)?

Questions for Mr Singh:

What was the result of the tissue tests on the prostate and surrounding margin where the tumour was poking through the capsule? I have been told the stage was confirmed as T3a.

In that area the prostate was stuck to the surrounding tissue. Was this because of the tumour or because of damage done by the targeted biopsies in that area?

The tissue margin tested positive so there are cancer cells present. These are presumably still prostate tissue and cause or contribute to the residual PSA level I have of 0.02. Is that correct? What does a positive margin mean? How deep a margin was taken? Cancer to edge or not quite so far? Artefact of surgery (iatrogenic intraprostatic incision) or already there before the operation? Was the positive margin adjacent to the prostate apex?

Could these cells produce tumours and if so how long might that take? I was told that it could take years for tumours to be detectable by scans or not happen at all. Can any of these cells move into the blood stream or lead to tumours in other organs or bones?

General prognosis I was offered is that 50% on PSA monitoring would not develop further cancer. Of the other 50% half would respond successfully to further treatment, radiotherapy e.g. and half would not. I didn’t make a note of these figures so I may have mis-remembered. Are these figures correct?

What do the statistics show in terms of the likely time period before radiotherapy is recommended? Are the majority 1 or 2 years or is 3 to 5 more typical? The issue here is that the older a patient gets the more likely the recovery will be affected and suffering from side effects.

If I stay on observation and PSA monitoring how often would this happen and what would trigger concern and a recommendation of further treatment? What would the monitoring be looking for in order to trigger radiotherapy and how quickly would this be commenced.

Is there any expert nutritional advice available for my condition?

Questions for Dr Owen:

What of the new more accurate and targeted therapies? I’ll get a name for these.

Do they take a scan to identify where in the pocket where the prostate used to be (the bed?) to identify sites that need targeting? I understand that once the prostate is removed and the radiotherapy is targeted at the prostate bed it is difficult to measure up and reliably direct radiation and that there is a danger of over dosing the bladder and bowel. Is this correct?

I’ve more time to think about this but would be mostly concerned with the actual procedure and possible side effects, what they could be and how probable. The main ones seem to be incontinence, erectile dysfunction and damage to the bowel. I would need to know how long these tend to last or if they can lead to permanent conditions.

Look at


6 week post-op update

It is nearly a month since I last posted and nothing much has happened. I’ve made quite good progress largely through walking although I’ve picked up the pace a bit with racketball.  I started coaching again from Thursday 8th September and returned to doing full Monday and Thursday sessions from Monday the 19th. This was 4 weeks after the operation. I warmed up gently in the gym rather than on court with the other players and did some of the less physically demanding practice routines with them. When it came to playing matches I stayed on the court where we had 4 playing in rotation (so plenty of rest time) and didn’t chase anything, limiting myself to hitting balls that were within a step or two to reach. No twisting and turning and rapid changes of direction. I felt pretty good and knew I was taking it easy as I had no leg aches and pains afterwards, normally a sure sign I had been pushing myself. Last Thursday (29th October) I did the club training evening with our coach, Saeed, and pushed a bit harder. I had done the morning U3A session too with a bit of coaching but had taken it very easy. But by the time Thursday was over my legs were pretty sore so I knew I had been pushing myself round the court a bit harder. The Thursday evening sessions are harder as the players who attend regularly are all pretty good and serious players.

Since the beginning of the month my weight has gone up and stabilised around 12 stone 10 or 11 lbs and, as I write this, I have a bit of a chest and throat cold. This has kept me in doors for the last couple of days but today, a cool but bright and sunny day, I did a 5 mile walk along the canal and am beginning to feel better.

I’m going to see Mr Singh, the consultant, on Thursday this week to hear the results of the tissue tests and the blood test I had done at the BRI Thursday last week. This is when I’ll find out if there is any evidence of cancer in the surrounding tissue and whether I will need radiotherapy or any other further treatment.

The walking cure

On Wednesday 31st August, the day after my catheter and staples were removed, I started a walking regime to help me get as fit as quickly possible. It is now a week later and since then I have met the steps target set me by my Vivofit everyday. While I continue to hit the target the Vivofit increases the step target each day. Last Wednesday this was 7728 and by Tuesday 6th September it had increased to 9347. Over the week I walked 82,912 steps, an average of 11,845 per day, about a 5 mile average. Walking was the only form of exercise that was recommended for the first few weeks with no further instructions other than to “listen to my body”, which I did. Towards the end of the week I started to incorporate a few hills. I’ve been very happy with the way it’s gone and feel significantly better now than I did a week ago. More of the same for another couple of weeks I think although I will not be particularly worried if I don’t meet the targets set every day from now on.

I went to the squash club at Heaton on Thursday 1st September, 11 days after the operation, and had about a 10 minute knock by myself to see how it felt. I didn’t push it at all, just hitting to myself down the side walls in the channels and some figure of 8s at the front to minimise my movement and not damage myself. I felt fine with no twinges. I did the same again on Monday 5th with the same result. I will start going regularly to build on this but it will be a while before I play against an opponent, even socially. Thursday I should be able to return to doing a little coaching as before. My weight has stabilised at around 12 stone 9 or 10, about 6 lbs lighter than when I went in for the operation so my strategy to not put on weight seems to be working so far.

With a view to starting cycling again I have been researching saddles with a cut-out to relive pressure on the perineum. Normal saddles put pressure on this area and can be quite painful for quite a while after a radical prostatectomy as this bears directly on the area where the urethra has been joined up. This gets better over time apparently. I probably won’t ride until I’ve seen Mr Singh and I may need to know if I should delay until after radiotherapy if that is needed.

I have spotted on a couple of occasions a very small blood clot being passed in my urine but have decided not to worry about it. I have 4 weeks before my scheduled appointment with Mr Singh and the BRI (when I will get the histology report and learn if I need radiotherapy) and will mention it then if it continues.

Getting back to normal

On Tuesday 30th September August the catheter and staples removed. The catheter removal I had dealt with before but staple removal was new and I was quite apprehensive about it. The staples are more like the staples you hammer into wood to hold wires in place rather than the office type of staple that go through paper and bend round so the procedure was quick and painless apart from the odd brief sting. Normally staples come out between 10 and 14 days but it made sense to remove them at the same time as the catheter appointment in this case if the surgical wounds are sufficiently healed, which they were.

Then it was just a case of sitting in the waiting room and drinking slowly and steadily two 700 ml jugs of water in order to produce three sufficiently prodigious wees. This involved going to the gents’ toilet and weeing into a bottle with you name on it on a rack – there were 5 men going through this procedure. Every now and then Staff Nurse Sarah (who I thought of as Nurse Catheter) would check the bottles, record volumes and empty them. I managed this without too much difficulty and was allowed to leave at about 11.00 am when Julia picked me up to take me home. I was given a few incontinence pads to take home with me and I was advised to use one straight away before I got of the treatment table as there might be a sudden surge as I stood up. Nothing happened but it was better to be safe than sorry. It is not always as straightforward as this I discovered talking to the other men. Sometimes there is no flow and the bladder just fills up. In these cases a catheter had to be installed again. We were advised to only drink about one small gals of water per 15 minutes as in the past men keen to get away had drunk 2 jugs full straight off in their haste to get away only to find they couldn’t wee and put themselves through some serious pain before a catheter could be replaced.

On arriving home I went for a walk around the local park and felt immediately that I could walk better and in more comfort now the catheter had been removed and felt optimistic about gradually building fitness again although this would be restricted to a walking only programme for a few weeks. I wore the pads for the first two days but didn’t have any leakage problems at all so have pretty well dispensed with them although I’m not fully confident. Most men suffer to some degree or other form incontinence after the operation. For many it is only for a few days, perhaps a couple of weeks. For others it is a constant problem that requires further corrective surgery. It looks like I will be one of the few who don’t suffer at all. If this is the case I think it will be down to two factors, my general level of abdominal fitness through cycling, walking and racketball and the fact that I have been pretty assiduous in doing my pelvic floor exercises for a couple of months before the operation.

My key advice to any man who is going to have this operation is to try to lose a bit of weight and get fitter if necessary but in any case do your pelvic floor exercises. I was instructed to do the exercises as soon as the operation had been done and not wait for the catheter to be removed. While incontinence remains a problem you should do the exercises the recommended 3 times a day. Once continence is achieved this can be cut down to twice a day, for life. Given that you can do these any where at any time, standing up, sitting or lying down, and they only take about 2 minutes there is no excuse. I shall continue with 3 times a day.  I may yet have to have radiotherapy, depending on the histology reports on my prostate and the surrounding tissue removed. This can also produce continence problems as side effect so I want to be in as good nick as possible just in case. I will find out if I will be getting radiotherapy when I see the consultant again on the 6th of October.

Yesterday, Wednesday, I went on a fairly hilly walk of about 2.5 miles and am feeling stronger every day. I will be building up the walking over the next 3 weeks before I have a short easy bike ride, probably only 10 minutes or so somewhere flat, to see how that goes. I’ve had to withdraw from two racketball tournaments in both of which I was lying 2nd in my group. However, the 2016 Yorkshire Racketball Championships are to be held on November 26th and 27th and I hope I may be able to play in this, in the over 60 group.

Immediate post op and discharge

I finally went down to the theatre about 2.00 pm on Sunday 21st August and woke up in bed round about 7.00 pm that evening is some discomfort. Julia was there and apparently we had a conversation but I remember very little about it. She reports that I said I thought something had gone wrong with the operation as I had oxygen tubes up my nose and I don’t remember any one else coming back form the theatre with these. I also had a little more pain than I expected. She left after 30 minutes as I had fallen back to sleep. I was awake at midnight as I had to have some pain killers, a combination of paracetamol and Tramadol (officially a class A drug) and injection of Tynzoparin, a blood thinner. I had the first of these at midnight Saturday and I must have one every 24 hours for 28 days after the operation. These are to help avoid DVTs during a prolonged period of relative inactivity. By now a rather confused and near unintelligible man had been put in the bed next to mine and spent the next few hours calling for his wife. He thought he was in bed at home and that his wife was downstairs. He quietened down in the early hours and I eventually got off to sleep again.

I hadn’t eaten or drunk since 7.00 am before the operation. I had been given a mouth care pack back on the ward, basically a small amount of water and sponge ‘lollipops’ to moisten my lips and mouth, so by 7.15 am on the Monday I was looking forward to water, a cup of tea and some breakfast. During the operation and over night I had been on a hydration drip. I had to, and will continue until the catheter is removed, drink 2 litres of water a day to keep every thing flushing through. No fresh fruit on offer so a small portion of orange juice and a bowl of fruit and fibre cereal. Julia had brought me some fruit and a Sunday news paper the night before,placed on the seat beside the bed, but I couldn’t see these and hadn’t remembered. I was still quite sore and it was hard to change position in the bed without pain.

The doctors’ ward round took place about 9.00 am. I didn’t see Mr Singh, the surgeon who had carried out the procedure, but another surgeon who apparently assisted him. He told me that the tumour had been quite a lot bigger than expected and had poked out of the wall of the prostate a little more too. This meant they had to take a wider ‘clear margin’ in addition to the prostate on the side with the cancer than planned. There had been some discussion of whether they should remove the lymph glands in the circumstances but decided against it and stick to the original plan for surgery. Another complicating factor was that the prostate in that are had ‘stuck’ to the surrounding tissue. They don’t know yet if this was because of the penetration of the tumour or because of damage done by the targeted biopsies taken from the same area. All the material is sent of to the laboratory to grade the cancer in the prostate and to see if any cells had escaped into the surrounding tissue. I was warned that this increased the chance of needing addition radiotherapy but the results would be back in time for the consultation meeting 6 weeks after the operation. In the meantime we must just wait and hope for the best.

Later that morning Mr. Singh came to see how I was getting on and I told him what I had been told. He seemed slightly surprised. He confirmed what had been said but seemed slightly more relaxed about it. His assistant turned up at that point and seemed nervous that I’d now been told something different. I am assure him I hadn’t.

All that remained now was to get onto my feet and walk a few paces when I felt able and, all being well, got through the discharge procedure so Julia could come to pick me up and take me home. I had a couple of short and very slow walks down the ward corridor and by lunch time I was given the all clear to go home. Unlike last time I was on the ward after my bike accident, April 2015, I was to be discharged from a special unit in ward 19, the other end of the hospital, too far to walk but I would be picked up and taken there in a wheelchair. I found getting dressed and packing very painful and after a while went to the nurses’ station to request the pain killers I had, as is my normal practice, turned down in the morning. I handle low levels of aches and pains pretty well and have always preferred not to take drugs if not necessary as there is always the possibility of side effects some of which can be long lasting and damaging. However, I didn’t think I could get through discharge and then home by car without some help. They gave me another 2 paracetamol and 2 Tramadol and within 20 minutes or so I was feeling better. The nurse taking me to the dischareg unit came for me at that point and finished my packing and put my socks on for me, put my shoes on and tied my laces. The first time anyone had done this for me since my mother over 60 years ago!

There was a slight hiccup and delay as my prescription for take home pain killers was wrong and had to go to another doctor to be altered. The discharge procedure took nearly 3 hours in all (it only took 1 hour on the ward last time) but went fairly smoothly. Most of the time was waiting for the prescription to made up by the pharmacist. I was given a packet of paracetamol and of Tramadol and two packs of Movicol, a mild laxative and stool softener. They were keen that I didn’t strain while going to the toilet especially as lack of activity could cause a degree of constipation. I was also given a pack of 28 preloaded disposable hypodermic needles for the self administered Tynzoparin injections. These could be done by a visiting district nurse but I had watched the first two given me by nurses and decided I would start of by trying to do it myself.

Then I was ready to go. I had phoned Julia a little earlier and I walked to the entrance with the nurse carrying my bags and medication so that Julia could just pull up and I could get straight in. She was there, it was about 4.20 pm by now, and I had an uncomfortable ride to Greengates in the beginnings of the rush hour traffic. However, it was good to be home and after a light dinner all that remained was to stay awake until midnight to give myself the my first injection.Although quite fearful about this it was OK and I’m sure I’ll get used to it. In fact you are given a 2 hour window either side of the 24 hour period so I did it at 10.30 and continued to do it at 10.00 pm, our normal bedtime, give or take. The next morning, Tuesday, we would plan my recovery programme – particularly exercise and diet.

Locally advanced prostate cancer T3a

This morning I had a a phone call in reply to the questions I emailed yesterday evening. David and Ian do get back very quickly which is excellent. The email asked a couple of questions that arose when I had given a bit more thought to yesterday’s conversation and a bit of research I did subsequently. The biopsies discovered additional more aggressive cancers and I had now been given a Gleason score of 7 (previously 6). The total score is made up by the addition of the individual scores for the grades of cancer. 3 is the lowest grade for slow developing cancer so the best grad to have that indicates cancer is 6. A score of 7 indicates that there is some cancer present of the next higher grade, 4, which indicates more aggressive and fast growing. The score of 7 can be a 3-4 or a 4-3 where the first score is for the most common grade. Mine turns out to be a 3-4 and, as the prognosis for this is better than for a 4-3, this constitutes good news!

However, I was also told at what stage my cancer had developed too, T3a. This is not good news as it is now deemed to be a ‘locally advanced’ prostate cancer. T3a means that the cancer has broken through the capsule of the prostate but there is no evidence of it having yet spread to the seminal vesicles, lymph nodes, bones or other adjacent organs. Ian on the phone this morning said that the tumour is ‘pressing on the surface’ which implies it hasn’t broken through yet. What this means thou is that remaining on active surveillance is no longer an option and some treatment is necessary. I am seeing the consultant on the 21st July when we get back from France and the recommendation is highly likely to be surgery, a radical prostatectomy. Whether I will need radiation treatment as well after the surgery will depend on what they find and subsequent pathology tests. Ian said they may go ‘a bit wider’ on the right side where the tumour is pressing and that this might lead to a bit more nerve damage. I assume this might have consequences for my rate of recovery form the normal side effects; incontinence and erectile dysfunction so it is something I will need to ask about..

According to this leaflet from Prostate Cancer UK surgery is not normal offered to men with advanced local cancer.

 “A small number of men with locally advanced prostate cancer may be offered surgery (radical prostatectomy). This isn’t very common and is usually only offered as part of a clinical trial”.

Locally advanced prostate cancer

I assume that this is because once the cancer is through the capsule then surgery can no longer offer a cure and other treatments would be necessary anyway. Ian was talking this morning as if surgery was going to be recommended. If this is the case I can only assume they are confident that the tumour is still contained albeit pressing on the surface and so surgery is a good option with the chance of complete cure. The fact that he said they may need to go a bit wider where the tumour is pressing suggests they are not 100% confident as is the suggestion they may still recommend radiation treatment, depending on what they find while they’re in there.

All the Prostate Cancer UK fact sheets and tool kits are available to download from here:

Prostate targeted biopsy results

Today, about four weeks after the biopsy procedure, I phoned the BRI and got the results which were discussed at yesterday’s multidisciplinary team meeting. I was told that the results were positive and two of the samples (12 in all) showed more aggressive tumours and a greater volume of cancer. My Gleason score has been put up from 6 to 7. I know that this is the addition of two separate scores for what are considered to be the primary and secondary tumours. A score of 7 can be 4+3 or 3+4 where the prognosis is significantly different in each case (the first case being less favourable) and that this will inform the discussion and recommendations of treatment. I was told one of the options would be a radical prostatectomy followed by radiation. I didn’t query this at the time but it might mean there is a risk the newly discovered tumours are either pressing against the prostate surface, the capsule, or even through it. It may still be local, i.e. not metastasis, but it would mean surgery alone might not be enough. I was going to be offered an appointment with the consultant, Mr. Singh, on Thursday 14th July but I will be on holiday in France on that date so it will be pushed back to the following week, probably Thursday 21st. I was assured at the time that a delay of a week would be insignificant but I have emailed and left a phone message this evening asking for more details on the Gleason score and a reassurance I don’t need to cancel my holiday. I will if necessary. This is bad news but I’ve been prepared for the worst ever since I was told the MRI scan showed a cause for concern and a targeted biopsy was needed. Given all the crap that is going on at the moment over the referendum result and the UK leaving the EU I have been as low today as I have ever been. No doubt I will feel better tomorrow and have a weekend in Oxford coming up with my family of 81.


Second biopsy

After seeing Mr Singh last Thursday I have opted for another targeted biopsy. At the moment I have been diagnosed with T1 cancer in roughly the position in the diagram below but, after a reinterpretation of my January MRI scan, there is cause for concern about the possibility of further cancer in the lower, narrowing part of the prostate. Apparently only about 5% of cancers are detected in this area but when they do occur there it can be dangerous as they are nearer the surface and can more easily break out into the surrounding tissues and organs. The biopsy may show nothing of concern, perhaps just some inflammation, but if there is any cancer there, even of the low grade I already have, then it looks like surgery will be strongly advised given the vulnerability of the area. Although this would be bad news as long as the cancer is still contained then the post surgery prognosis should be optimistic. I am expecting and appointment in the next 2 weeks and results should follow in about another week or two so hopefully by the end of May I will know where I am. When surgery was initially discussed last year I was told it could be scheduled in about four weeks or so. If that is the case it may be about the end of June that I have the operation. According to the NHS website it may take several months for my body to fully recover from surgery. The say it is necessary to take it easy for the first couple of weeks after surgery and then a little light exercise such as a short walk every day to improve fitness. I will need to avoid climbing too many stairs, lifting heavy objects or doing manual work for eight weeks after the operation. I will have to ask about cycling but it looks like this would be out for a couple of months. Also my early trips to Oxford and France look would be out, especially if fitted with a catheter. Diagram_showing_T1-3_stages_of_prostate_cancer_CRUK_278.svg

Trust me, I’m a doctor

A few notes on the first in the new BBC series, broadcast tonight. It was of particular interest to me as it dealt with the effectiveness of whey protein as a muscle builder, how to slow down or even reverse muscle loss as you get older and what are the best times to exercise for weight loss with respect to eating. It also looked at the claims of taking fruit smoothies as a source of antioxidants. To summarise the findings:

Protein powders do not increase muscle growth providing you are getting sufficient protein in your diet. Any surplus is burnt as energy, is stored as fat, or is peed out of you system. The role of protein powder as part of a weight loss strategy was not considered in the programme. However, tests showed that protein supplements pass into your muscles in about 3 hours and the uptake is more in muscles that have been exercised.

Muscle loss starts in the over 40s at a rate of about 1% per year and after 50 at about 5% per decade. This is inevitable and is part of the normal ageing process – sarcopenia. This leads to loss of strength and power output as well as part of the reason balance deteriorates with age. The programme demonstrated how a few simple exercises done in the home without special equipment and generally without raising a sweat (so presumably not a cardiovascular workout) enabled a group of late middle aged and older subjects, over a 4 week period, have a 3% increase in muscle volume, a increase in strength of 12% and a power output increase of 13%. No special diet conditions were set.

The effects of exercise for fat burning were measured comparing subjects that exercised before eating in the morning and those who exercised after. Apparently the fat burning effect takes place in the hours after exercise and not so much during. This was not explained but it may be because the fat is used to replace carbohydrate energy stores in the blood. The effect was about 3% to 8% additional fat burn for men who exercised before eating and the same for women who exercised after eating. This is a new finding and may be explained by men having more muscle than women and the way the different sexes utilise energy.

Antioxidant drinks have no effect. If anything they produce an antioxidant spike that the body responds to by decreasing the amount of internally produced antioxidants so that the normal level is reduced and does not recover for 24 hours. So the supplements are counter productive. In any case, free radicals are necessary as they signal muscle damage has been done and repair mechanisms kick in. The balance between antioxidants and free radicals is managed by your body automatically.

The final snippet of information concerned looking at if being overweight was necessary a bad thing and whether fat loss was always something beneficial to strive for.  Fat round the bum and legs, hips generally, was not seen as particularly dangerous but round the stomach and abdomen definitely bad. BMI is still seen as a reliable measure of weight for mos normal human beings and under 25 is the recommended target. However, between 25 and 30 is OK for more elderly people, say over 65. Bearing in mind BMI is sensitive to the ratio between muscle and fat, in older people a highish BMI might be because muscle loss effects the ratio rather than just a matter of excess fat.

Finally there was advice about reheating food. Generally OK but be careful with rice because the bacteria present, although can be killed by thorough reheating, may have produce toxic spore that are immune to heat.

Trust me, I’m a doctor web site.


Prostate cancer update

I’ve decided to put any posts related to my condition here rather than were they are up until now in my cycling blog which from now on I will restrict to more directly related issues. This blog will be rather more eclectic and will cover a much bigger range of topics but still including stuff on health and lifestyle. Where it seems to be appropriate I will cross-post between the two blogs or at least refer to and summarise posts on the other blog. The two posts specifically about prostate cancer on the cycling blog are Prostate Cancer posted 15th August 2014 and Active surveillance posted 29th August. One thing I forgot to mention in the last post is that, on making a firm decision to opt for the active surveillance programme I was informed by Dr. Owen that this had been the interdisciplinary group’s recommendation. This is the first time I had heard this and I must say it gave me some confidence in my decision. I guess that was the point f not letting me know earlier  – let the patient make their own mind up since there was no sure-fire way of making the right one anyway.

Having opted for the AS regime this involves a 3 monthly PSA blood test, and initial MRI scan 3 months after going on the programme and, if necessary, further biopsies if changes in the prostate and tumours warrant them. I had a blood test early December 2015 which gave a result of 8 – a little higher than the last one, 7.9, but quite a lot lower than the highest taken while I was in hospital with the ruptured kidney of round 9. So the latest test may mean something or nothing – the usual problem with PSA tests. The initial MRI scan due at the same time (part of the AS protocol I was told) never happened but after chasing this up I have it booked for 28th January. I understand from others on this programme that test time is a particularly stressful period as you dread being told the tumour is on the move and surgery, etc. is now necessary. I can feel the tension mounting already even though the scan is 3 weeks away, in fact the day before my 70th birthday.

Rectum? It certainly didn't do them any good. (Thanks to several Carry On films for this)

Ouch! An ultrasound probe is inserted into the rectum to show where the tumor is. Then a needle is inserted through the rectum into the prostate to remove tissue. Apparently 1 in 10 men find the biopsies process too painful to tolerate so it is abandoned and rearranged under a general antithetic. I was one of the 9 out of 10 lucky ones.