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.
On Sunday 10th April Laurie Bailey and I (almost) completed the 60k version of the Tadcaster sportive. In fact we went slightly off route and missed about a 3 mile loop but I was still pleased with how I went. I was confident I would complete the distance but not if I would be able to keep up with a reasonably paced group. We found ourselves in a pretty fast group that batted along at between 15 and 20 mph most of the time and the initial hilly section (about 10 miles of fairly gentle undulations were ridden entirely on the big ring. I was also a bit worried about how safe I would be on a strange and rather fast steering bike riding in close company. I hadn’t ridden my Giant Defy for over a year and had not been on anything like a close ordered group ride for over 30 years! But all was well and I soon got back into the swing of things. When I think of how many thousands of miles of club runs, chain gang sessions and races I have done then perhaps I should have been a bit more confident in my ability. The average speed was just over 15 miles and hour. The whole thing was a great experience and left we keen to do some more this year. Laurie is about 10 years younger than me and a strong rider. I was OK at the back of the group but when needed he paced me to keep me in touch. I seems I can still follow a wheel pretty closely! Over the last 4 miles or so I began to tail off on the finishing hills but always kept going and soon made contact again on the flat and downhill.
Although I had intended to do the Lincoln Arrow sportive in May as well (the one I had to pull out of last year after my mountain bike accident) I will be away that weekend on a narrow boat holiday on the Leeds Liverpool canal. However, there is a similar event near Wetherby in September and I hope to find some audax events or reliability trials before then too. I’m gradually building my fitness and cycling a bit more regularly now. Last week we were in Norfolk staying at Sutton Lea Manor with family and I managed to ride everyday while we were there covering just over 80 miles in short rides of between 7 and 15 miles. This was on my Ridgeback hybrid, a very different experience to riding the much lighter and responsive all carbon Giant Defy.
Just finished dreading Emily Chappell‘s What Goes Around, the memoir of a London bicycle courier. I thought it was an excellent read and would recommend it to anyone. It’s not just about urban cycling and really more about psycho-geography and how multiple universes coexist (the economic, the political, the intellectual and the emotional) in the same geographical space as well as interlocking and overlapping human networks of relationships. The fact that she is a lesbian in the predominantly male world of bike messengers adds an additional invaluable level of insight. In the early 60s I used to commute into the centre of London everyday by bicycle from the leafy suburbs. In the late 60s I was a company rep working in the same areas Emily would mainly work in as a courier. In the early 70s I was a minicab driver in London for a while and, in the mid 70s in Leeds a motorbike courier so I recognised a lot of the culture and life of the free-wheeling wheeled piece workers and the raggle-taggle community they make up. I must admit to getting quite nostalgic reading the book. But then was then and now is now. She will be visiting the Pedallers’ Arms on March 8th to give a talk.
Last Spring, 2015, I was due to embark on my programme of Sportives and with that in mind I entered the Lincoln Arrow, a suitable short and relatively flat event to get me going. As I reported in May however(Not according to plan) I had to pull out after my mountain bike accident. This year I’ll have another go. I’ve entered the Tadcaster sportive on the 10th April. I’ll be doing the short version, 60 km, and it should be pretty flat. All being well I will also enter the Lincoln Arrow again on May 22nd, probably also the shorter route of 48 miles. This has a few modest hills but is none-the-less pretty flat. Another trip I had to cancel last year was to Islay with my friend Mike to do a bit of cycling and go to the beach rugby at Port Helen. I wrote about this in June 2014 – Cycling on Islay.
I’ve decided to put any posts related to my condition on my other rather wider ranging blog rather than here on my cycling blog which from now on I will restrict to more directly cycling related issues. This other blog – the mood i’m in – is much more eclectic and covers a much bigger range of topics 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 text below is cross-posted from the other blog. From now on if you wish to follow the prostate saga you can do so on my other blog.
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.
Went to see the radiotherapy consultant last Thursday and came away feeling rather more optimistic. I haven’t yet mad a final decision yet but I’ve swung back in favour of active surveillance. Dr Owen told me that my cancer is 6 on a scale from 1 to 10 where 6 is the lowest grade of cancer tumours and therefore the least aggressive and lowest risk. This grading system appeared to be different form the one the surgeon consultant was using a couple of weeks ago as reported in my last post when I was told I was 6 on a scale of 10. However, the printed report I was given says that my grade is 3+3 which (using information on the web Gleason grade and Gleason score) is the lowest grade where 1 and 2 are variants of normal prostate cells. A Gleason score of 3+3 indicates all of the cancer cells found in the biopsy look likely to grow slowly. Not however the term ‘likely’. Dr Owen assured me the previous consultant and she are only talking about the active surveillance option because the cancer is in all probability low grade, slow developing and local to the prostate. If I go on the active surveillance programme I will have my blood checked for the PSA level every 3 months along with physical examinations but will also have an MRI scan to see if there are any visible signs of tumours pushing against or through the prostate wall. If the scan is OK then blood test will continue at intervals to check to see if the PSA level is stable and, all being well, another targeted biopsy will be taken after a year. If there are signs in the future that the cancer is more aggressive than thought the options of surgery and/or radiation therapy are still open. If this is caught early enough there is still the possibility of cure rather than simply managing the condition. The downside or active surveillance is that a proportion of men on it end up having surgery or other treatment anyway and, as they are older by then, the side effects can be more problematic and recovery take longer. In some cases it is found a more aggressive cancer was present all the time in which case it would have been better to have had surgery or radiation treatment straight away in the first place. Every decision comes with risk. The virtue of active surveillance is that for many men it means they do not undergo unnecessary and invasive treatment that could have serious life changing bad consequences for them.
Part of my rationale for seriously considering active surveillance is that I am a relatively fit and otherwise healthy 69 year old and have the prospect of getting quite a lot fitter over the next 6 months or so. Generally speaking younger men recover from the treatments much faster than older me simply because they are fitter and have better muscle tone in the relevant areas. One example is that men in their 50s are much more likely to have side effects like incontinence and erectile dysfunction clear up significantly faster than older men, say in their 70 or 80s. This is not because the procedures are any different for younger men but because they have a higher level of general fitness. As far as incontinence is concerned this is to do with the condition of pelvic floor muscles which is why we are encouraged to do specific exercises to strengthen them before treatments are carried out. My plan would be to develop the pelvic floor muscles of a young man pre-emptively so that if/when I have surgery or radiation in the future I will be in the best possible condition to deal with it and recover.
As a matter of interest I had two different radiation options detailed – the insertion of radioactive seed into my prostate (Brachytherapy) and full external radiotherapy where a programme of treatments takes place in 5 day blocks weekly of about 7 weeks. More details can be found on the MacMillan web site Radiotherapy for cancer of the prostate.
On Thursday 13th August I discovered I have prostate cancer. While I was in hospital as a result of my kidney injury after a mountain bike crash an examination discovered my prostate was enlarged (normal for some one of my age) and asymmetrical. Couple with a blood test that showed I had a high PSA (prostate specific antigen) reading of 7, I was advised to have a prostate biopsy as soon as I had recovered from the accident. I had this on Monday 27th July and met with the consultant today to let me know and discuss the options.
The biopsy took 12 core samples the positions for which were chosen on the basis of measurements of the enlargement. One of the samples revealed a low grade low risk cluster of cancer cells. These are of a slow growing type and are unlikely to kill me before I die of something else age related or an accident. Like most men with this type of cancer I would eventually die with prostate cancer rather than of it. I could just forget the whole thing, hope for the best, and get on with my life. The problem with this is that the biopsy may well have missed other areas of cancer one or more of which may be of the more aggressive type. In fact this would have been the case if no cancer had been found. Even biopsies are not conclusive when they find either none or low grade cancers.
So we started discussing the treatment options. The first on offer was something called active surveillance. This is appropriate for localised prostate cancer, that is cancer that is contained wholly within the prostate. Its the ‘wait and see’ approach. Blood tests are taken every three months to check the PSA level, physical examinations and possibly scans are taken less frequently and probably another biopsy every year. If things begin to go pear shaped then intervention treatments can swing into action at that point. Some men go years on this scheme and never appear to develop aggressive cancers or develop metastasis, the development of secondary malignant growths at a distance from a primary site of cancer, so-called secondaries. One problem with this is that physical examinations and scans cannot detect the micro ‘leakage’ of cancerous cells from the surface of the prostate. So the decision to adopt this strategy is based on the probability that the cancer is contained. Another problem is that the PSA level is not a reliable indicator of cancer anyway. Even if the level remains constant or goes down doesn’t mean that no aggressive cancers are developing. Apparently the most aggressive types don’t produce PSA. Finally many men on this programme still end up having interventionist treatments within the first 5 years and the delay can in some cases let the cancer develop to such an extent that it can only be managed rather than cured. If the cancer is detected early enough in many cases a cure is possible. Where the cancer has not spread a complete removal of the prostate can be the end of the matter, a complete cure. After a certain point the language of ‘cure’ is dropped.
So far the decision is between ignoring the whole thing ans hoping for the best or keeping an active eye on things in the hope that if the cancer develops it will not be too late for a curative treatment. I would like some notion of the odds on this. What percentage of the ignorers go on to develop more serious cancers, what percentage are still caught in time to be cured and what percentage have to have the condition managed and go on to die of it eventually. How many years do they on average last and what is the quality of their remaining lives? For those on active surveillance, what percentage eventful have to succumb to interventionist treatments and what are the outcomes in terms of longevity and quality of life?
Then the discussion moved to the interventionist treatments. The consultant I was speaking with was a surgeon so he admitted to a bias in favour of surgery. One option is for a radical prostatectomy, an operation to remove the prostate gland and some of the tissue around it. The operation may be done by open surgery or it may be done by laparoscopic surgery through, usually four, small incisions, i.e. key hole surgery. At the Bradford Royal Infirmary this is done robotically. da Vinci robot provides pioneering treatment at Bradford Royal Infirmary. Patient feedback on the robotic procedure.
The key point here is that if the cancer is local it offers the possibility of a complete cure but there is a danger of serious side effects; incontinence and erectile dysfunction (ED). These side effects are normal but in many cases are temporary. The incontinence is normally caused by loss of strength in the pelvic floor muscles so patients are encouraged to do regular exercises before and after surgery. I think a sphincter is removed during the operation so it is necessary to learn how to take more conscious control of your bladder. Initially a catheter is fitted but comes out after 2 or 3 weeks. From then on incontinence pads deal with trickles but this usually improves over a period of up to 10 months and a lot quicker for most. ED is largely down to nerve damage either side of the prostate but modern surgery techniques can often preserve these, or some of them at least. Again for most men this is something that improves over time. The seminal vesicles are removed as well so no sperm or seminal fluid is produced leading to dry ejaculations which can be uncomfortable until you get use to them. Both permanent incontinence and ED can be treated, the first by surgery and the latter by various techniques. It is only after removal that the prostate can be examined to see if the cancer was contained. If so a cure is likely. If not radiation can be used as plan B.
One reason to consider surgery is that radiation can still be used as a fall-back but if radiation is done first surgery is not usually possible because of damage done to the prostate. Surgery seems to leave open the possibility of more options in the event of continuing or secondary cancers. And radiation can have much the same side effects a surgery in terms of incontinence and ED. I’m seeing a consultant to discuss radiation options on the 27th August so will know more about the pros and cons then.
In the meantime I have a specialist nurse contact I can call any time with questions. I have started my pelvic floor exercises and am continuing to do some research. My first reaction on learning I had cancer and that it appeared to be low grade and low risk was to opt for active surveillance. I may still go for this but I’ve swung round a bit to the idea of surgery for a number of reasons. First the biopsy is inevitably inconclusive. I may have high grade cancer and delay would increase the danger of metastasis if this hasn’t occurred already. Psa and scans can’t be sure of this; only removal and analysis. Also it leaves open the possibility of follow up treatments if surgery is unsuccessful. The side effects are usually temporary and effect only a small percentage of patients. In any case other treatments are available for these.
Despite all this there is an excellent chance (that I would like to quantify) that my cancer is low grade, slow to develop and I could just live the rest of my life as normal. But it’s a risk. The reason I am still thinking about active surveillance, for perhaps a year anyway is that I had to pull out of a number of racketball and cycling events because of my accident. I’d like to play, if possible in the over 70s National Racketball Championships next July. By then I’d be due for another biopsy and could make the decision about surgery then.
I’m amazed to discover my last update was in November 2014, 6 months ago. So here’s the latest although not as systematic as some of the earlier ones. The first report was in November 2012 when I recorded that from 17 stone 5 lb in July I was now down to 15 stone 10 lb. Today, just short of 3 years on I am 12 stone 5 lb, a loss of 5 stone. This has not been linear by any means and for about a year I stuck at round 14 stone 6 lb but starting to play racketball, a bit more cycling and regular walking, coupled to starting to log food and calories with MyFitnessPal, I got down to 13 stone by the beginning of April this year. Then I had my accident. When I came out of hospital after 8 days I was down to 12 stone 4 lb. Because of the type of injury and the fitting of a kidney stent so far I’ve been unable to ride or play racketball although I’ve started to do some very short sedate walks and a few exercises. Most of the weight I’ve lost is fat, so a good thing, but I’ve also lost a pound of two of muscle. My plan is to try and keep my weight down to 12 stone 5 lb or thereabouts by going onto a maintenance calorie allowance (1980) but increase the proportion of protein in my diet. Then, when hopefully the stent comes out sometime later this month and I can return to full exercise, I can raise my weight by regaining muscle, up to round 12 stone 7 or 8 perhaps. To this end I may even do a bit of gym work at the squash club.
I write this nearly 5 months after the last post and there is much to report. I am now 12 stone 5 lbs (much less than the 13 stone target which I hit in March) but this is due to a stay in hospital. All will be revealed in due course. A week after my first outing on my new mountain bike on December 1st last year I was invited to join the inaugural MTB group ride of the Airedale Olympic Cycling Club on Sunday 7th December. This was about 10 miles starting at Apperley Bridge, along the canal to just short of Rodley, over the pack horse bridge and though the woods back to Apperley Bridge before taking bridle ways and cycle tracks to Esholt and eventually back to the start along the canal again. I was pleased to keep up and enjoyed the trip very much.
As the first months of the year passed by I gradually got back on my hybrid and began to build a modest mileage with a view to riding the 48 mile Lincoln Arrow sportive at the end of May. All was going well until I decided, on the 14th April, to repeat the mountain bike route I had done with the AOCC last December. On the track running parallel with the railway alongside the water works I hit a patch of deep mud, came to a sudden full stop and somersaulted over the handlebars, landing on my back. I got up, felt OK, and carried on with the ride. What I did not realise is that I had ruptured my left kidney by landing on the water bottle in the rucksack on my back. I had a slight twinge when I went to bed that night but found I was weeing blood the next morning. To cut a long story short I was admitted the the Bradford Royal Infirmary on Wednesday and spent the next 9 days there. The damage was severe, a 4 on a scale of 1 to 5 for damage, and when I left to go home I had a kidney stent and strict instructions not to cycle or play racketball until the stent came out. This would happen when the kidney was fully repaired, sometime between August and October. As it happens progress has been much speedier and the stent should be out before the end of June.
I also came home weighing 12 stone 5 lb, a loss of 1 lb a day while I was in the BRI. This is mostly fat but some muscle loss too which I am much more worried about. I’ve decided to keep my weight under 12 stone 7 lb (the weight I was when I met Julia in 1973!) until I can start riding, playing and training again, and try to get back up to near 13 stone by putting on some muscle. Apart from some scar tissue the damaged kidney should regain most of the 25% damage and get back to over 95% function. It’s been a bummer as I had to miss two funerals of close family members, pull out of the Lincoln Arrow and a number of racketball tournaments including the NE Counties Championships and also a week’s cycle touring on Islay.Still, what doesn’t kill you makes you stronger or, in my case, thinner. The lesson to be learnt here is not to carry hard objects on your back while you’re cycling.
I started this blog in October 2012, 2 years and 3 months ago when I weighed 17 stone 7 lbs. I finish this year at 13 stone 8 lb. In fact I got down to 13 stone 6 briefly before Christmas but a few days of excessive eating and drinking with the family in Derbyshire piled it on again. I made some effort to mitigate the decline by skipping breakfasts and doing 1 hour walks instead and I assume this has helped a bit. Also in the few days after Christmas before I weighed myself again I played racketball 3 times and got back into my more moderated eating and drinking regime so I probably put on a bit more than the 2 lbs. Anyway, 13 stone 8 is a good place to start from to get down to the 13 stone I’m aiming for by the time the weather gets warmer next year. I’m confident that I can achieve this by mid March and probably earlier. I’m thinking about joining the Airedale Olympic Cycling Club and doing their Saturday social rides and then in due course attempting some 10 mile time trials. I also have plans to develop the Bradford U3A cycling group and doing more on my new mountain bike. I will have to revise my plans to do alpine passes when I’m 70 I think but some decent sportives and audaxes should be achievable.