Active surveillance

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.

Prostate cancer

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 InfirmaryPatient 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.


Progress update

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.

Not according to plan

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.

Christmas survived!

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.

MTB with the AOCC

I have posted this here retrospectively (May 28th 2015) as I forgot to do it at the time. This is copied from the post I did on Facebook at the time.


Went out with the Airedale Olympic Cycling Club on an 11 mile mountain bike ride today. There were 6 of us altogether with me bringing up the rear. I’d not met them before but they invited me to join them via Facebook. They were very friendly and made me very welcome. I was amused when I found the young woman that accompanied me most of the time was the club Welfare Officer! I thanked her for her pains by accidentally knocking her off when I hit a large boulder and stalled right in front of her. The pace was brisk at times, especially as it was quite windy. I was last through obstacles and crossing roads so spent a fair bit of time catching up but someone always hung back if necessary to make sure I could see where the route changed. I was familiar with most of it as I’ve been walking these tracks for several years now so there was never any fear of getting lost. I dealt with the slippery and muddy conditions OK and only opted out of one rather technical detour more through tiredness than being particularly concerned about the difficulty. Two of us stayed on the bottom track while the rest took to the hills in Jerrison Wood and we all met up again at Esholt. I got home feeling quite shattered but pleased I had managed OK. I’ve not done as much cycling this last year as I’d hoped (more walking and racketball) but I will start doing a it more now, probably mostly mountain biking through the winter but in the new year I may start going on the club’s social rides on Saturday mornings on the roads. These are between 30 and 40 miles so I’ll need to check on each route before I decide. Then later in the year I hope to go on the Leeds Cycling Campaign’s Sunday intermediate rides as these are about the same length I think. By picking appropriate rides from these two schedules I hope to able to do one decent ride every weekend.

First MTB ride

Construction of single track mountain bike route in Buck Wood.

I had my first ride on my mountain bike yesterday morning, about an hour and 20 minutes total on a route through Calverley Woods and then along the canal to Shipley and back on the road. The wooded section was the hardest with very muddy climbs and descents and leaves covering tree roots and rocks. After several days heavy rain the ground in the woods was soaked and very muddy in areas. One difficulty I found is that the thick carpet of dead leaves made the surface look the same pretty well everywhere and covered up the tree roots and rocks. This was probably not the ideal time or place for a novice to have a first ride! I was very pleased with how the tyres and low gears coped with this. It would have been impossible on my hybrid. I didn’t actually fall off but stalled a couple of times in deep mud partly through lack of speed and partly lack of technique and confidence. The section at the bottom of the valley near the river – narrow winding rocky paths through mainly holly bushes – was particular muddy and difficult. After that the tow path to Shipley was doddle and much more stable and comfortable than on the hybrid. The climb on the road up to Thackley was slower than on the hyrbrid, not surprisingly, but no problem given the gearing of the bike. The descent to Greengates was also slower but I still managed 20+ without too much effort. Not really what the bike is built for I guess. Both me and the bike were absolutely blathered in mud – all part of the fun I suppose. I should have given the bike a wash straight away but was too tired and wet so did it this morning. Easy enough with a hose, some bike cleaner and brushes. I left the forks on the intermediate ‘trail’ setting for the ride as I didn’t feel what I did really qualified for the ‘downhill’ setting but I will try all these in due course to see what difference they make. I have begun to look for other routes in my area and it seems I live in a bit of a hotspot for off-road riding. I found this link on the BikeRadar forum with some useful information [Getting off-road in Bradford area]. One of the links goes to a map of a route called the Bingley Bash. Coincidently I was talking to our window cleaner, Darren, who is a keen mountain biker earlier this afternoon and he mentioned most of the places discussed in the forum including the Bingley Bash. Buck Woods and Dawsons Wood are both about 5 minutes ride from home, as is Calverley Woods so it looks like I have plenty to go at. Here is a video showing a group riding some of the Bingley Bash. They seem to great fun falling off and laughing at each other’s misfortune! 

New mountain bike

017Today I collected a new mountain bike, a Giant Talon 0 from Edinburgh Bicycle Co-op in Chapel Allerton Leeds, partly paid for by the very generous collection my work colleagues made for me when I retired just over a year ago. I’ve done some easy off-road stuff on my hybrid bike over the years but it isn’t really suitable when the going gets a bit more rugged and technical so I’ve been thinking of getting a mountain bike for some time. The Talon seemed to be as good a specification as you can get for the money and better than quite a few. Reviews of earlier models suggested that the biggest weakness (and therefore the first candidate for upgrading) was the forks but the 2015 model has the Fox Float EVO CTD (CTD stand for 3 fork settings – climb, trail and descend) which is highly regarded. In fact the price for the forks alone is round £500, about half the RRP for the bike. It is the first bike I have had with disc brakes and the gears seem ridiculously low to a roady but I’m sure I’ll need them! Bottom gear seems to be 18 inches! For the full range of gears see the link below.

I’ve been invited out for a ride round Calverley Woods and the general area by a group of riders from the Airedale Olympic Cycling Club on Sunday December 7th who I contacted for advice on Facebook. I must admit to being rather nervous about this but I will go and at least introduce myself and see how far I get. The ride will be from Apperley Bridge will also take in the Canal to Rodley – Cragg Wood – Nunn Wood to Esholt – and back up onto the canal and take about one and a half hours. I’ll take my bike into Calverly Woods in the next day or two and see what it feels like. This video of a ride there does not fill me with confidence!

Many years ago (about 50 years) I rode a couple of seasons of cyclo-cross, cross-country racing (rather like the running version) on basically road bikes with lower gears, knobbly tubular tyres and a bit of old inner tube tied across the angle of the frame in front of the saddle to make the bike more comfortable on your shoulder when you had to run with it. The idea of cyclo-cross for riders like me – roadies and trackies – was a bit of fun and keeping fit in the winter. I was a bit heavy for the sport and spent quite a lot of time on my face in the mud with other riders riding over me! This was what decided me to take up squash as a winter sport instead, something I’ve revived recently in the guise of racketball. It will be interesting to see how I take to mountain biking. Although I’ve lost about 4 stone in the last 2 years I’m still pretty heavy and it’ll help when I’ve lost another half stone or so. I want to try out some of the mountain biking centre trails such as those at Dalby Forest but I’m sure there is lots to go at in and around Leeds and Bradford.

For the full set of gears on the bike – 24/38 with 11, 13, 15, 17, 21, 24, 28, 32, 36

27 months activity report

Up to now I have posted an update every 3 months or so but the last one was at the beginning of March this year, 9 months ago. In that one I reported I had plateaued at 14 stone 7 lbs, a weight I had been at, more or less, since August 2013. In the last report I determined to try and get down to 13 stone 7 lb by Spring 2015 with 14 stone being a significant milestone along the way. Now, 9 months later, I can report that I’m currently at 13 stone 8 lb and now hope to make it to 13 stone for next Spring. Through April until the end of September I lost another 3 pounds, bringing it down to 14 stone 4 lb but the breakthrough came at the end of September when I started using MyFitnessPal to record my food, calories and exercise. Through October and November I have lost a further 10 lbs (approximately 1.25 lb per week) and as I write this post I’m 13 stone 8 lb. To be brief, the system gives me a daily target of calories to lose one pound a week until I reach my target weight, 13 stone, and a comprehensive database of food types and meals to make it easy to calculate and record what I’ve had. Currently my daily target is 1,520 calories per day but any exercise I record lifts this. For example, because I played racketball today for 40 minutes I burnt 350 calories (a conservative estimate) and so I could consume 1,930 calories and still be on target for a pound a week weight loss. Even on days without cycling, walking or racketball and restricted to 1,520 calories I am not finding this at particularly difficult, using a combination of meals from the Hairy Dieters books and the Sainsbury’s ‘Be Good To Yourself’ healthy eating range of ready meals (3 for £6!). I’ve cut down on alcohol a bit but still enjoy a glass of wine most nights. I’ve also had to be a bit careful when eating out but the odd ‘bad’ day is not a problem as long as there are not too many of them. For the ‘badge’ below I’ve back-filled data to July 2012 so the loss recorded is over the last 2 years and 4 months although I’ve only been using the system since September this year.

18 months activity report

This post reports on activity for December 2013, January and February 2014. The previous 3 months (September, October and November) my  finish weight was 14 stone 7 lb. At the end of the current 3 months I am still 14 stone 7 lb so no loss or gain. Apart from a brief rise to 14 stone 10 lb at Christmas my weight has remained pretty constant since the end of August 2013. I lost 3 stone in the 12 months up to August 2013. I knew it would get more difficult to lose weight as it came down but I should be able to lose another stone over the remainder of this year or next spring latest. This gives me a target of 13 stone 7 lbs with 14 stone a significant milestone along the way.

December 2013 summary

Road 0 miles, 0 calories
Turbo  1 hr 35 mins,  877 calories
Walking 30.3 miles 2625 calories
Total weight gain 1 lb (final 14 stone 8 lb)
Exercise 3502 calories = 1 lb so diet and other exercise =  +2 lb

January 2014 summary

Road 0 miles, 0 calories
Turbo 1 hour 35 mins, 877 calories
Walking 30.3 miles, 2625 calories
Total weight loss 0 lb (final 14 stone 8 lb)
Exercise 3502 calories = 1.0 lb  so diet plus other exercise = +1 lb

February 2014 summary

Road 0 miles, 0 calories
Turbo 20 mins, 192 calories
Walking 56 miles, 4639 calories
Total weight loss 1 lb (final 14 stone 7 lb)
Exercise 3502 calories = 1.4 lb  so diet plus other exercise = +0.4 lb

The pattern of no road cycling and frequent short walks continues. I have continued to play racketball about twice a week over this period and played in a few tournaments. My intention is still to get down to 14 stone by this summer, perhaps sometime in July, so I will need to start cycling again this month and pay more attention to my diet.