Countdown to the operation

After the information I was given by phone reported in the last two posts, I had a meeting with my consultant on the 21st July. The additional tumours detected by the MRI scan and following targeted biopsies show a significant volume of more aggressive cancer that is pressing against the prostate surface and there is some evidence that cancer may have begun to poke through into the surrounding tissue. Active surveillance is no longer an option and, for reasons described in earlier posts, surgery seems to best choice as it leaves radiotherapy as a possible plan B. If the tests of the surrounding tissue that will be removed along with the prostate are all clear radiotherapy may not be needed but will be used as a backup if cancer cells are found outside the prostate. I have opted for the surgery. I was told that the provisional date for the operation is Wednesday 24th August but might be earlier as they have begun to do weekend surgery to help clear a back log of operations.

After this meeting Julia and I were invited to a seminar on the 4th August with other men due to have the operation over the next few weeks to meet with the surgeons, radiologists and physios to have the operation explained in more detail, what the side effects are and how these are treated. Mr Singh, who will be my surgeon, was very enthusiastic about the semi-robotic procedure that the BRI are now very experienced with and the much better rates of recovery obtained. We were shown one of the arms that are inserted through a small 2 cm incision with the surgical implements and how they worked to get round corners and into the restricted areas that in the past have made prostate removal such a tricky business. The operation involves 5 small ‘keyhole’ incisions for the surgical instruments and the camera. A slightly larger incision is necessary for the removal of the prostate. They will be taking some additional tissue from around the prostate where the tumour is poking through and tests will show whether any cancer cells have leaked out. If so I will need 4 weeks of radiotherapy in due course when I have recovered sufficiently from the operation but all being well this won’t be necessary. However, I’m not optimistic about this and so far my intuition to fear the worst has proven to be correct. I hope I’m wrong this time. On the whole the seminar was positive. A patient who had the operation a couple of months before spoke about his experience and I found this to be encouraging. He had a Gleason score of 9, so a higher risk than my score of 7. He is currently waiting to see if he will need radiotherapy but has had little problem with incontinence. The other highlight of the seminar was the talk about Viagra and the vacuum pump and there use to try and rehabilitate erections. These can take up to a year to return and for some men it never does. I depends on how easy it was to get erections before the operation and how much nerve damage is sustained. The Viagra and pump are to help keep the blood vessels in the penis fully functional so that all is well if and when the nerves get their act together sometime in the future. The pump produces an erection that deflates as soon as the pump lets in air again but apparently it can be sustained for a while with the use of a rubber ring that acts like a tourniquet. This looks quite painful so I don’t think I’ll bother! The combination of the Viagra (3 to 7 a week for 10 days or so I think) and the daily use of the vacuum pump is just to keep things ticking over and to prevent your member withering on the vine,so to speak. The other rather disconcerting aspect of the operation is the necessity to self-administer injections into the fat of your tummy with a blood thinning agent. I think this is for about 10 days and is to minimise the development of possibly life threatening blood clots. Our man said he had no trouble with these and the needles used were about as thin as you can get. We’ll see.

Anyway, I have just learnt that my operation is now confirmed for Sunday 21st August, three days time, and I will be going into Ward 14 of the Bradford Royal Infirmary 2.00pm Saturday afternoon.

Update: Saturday 20th August, 12.00. Just been told there won’t be a bed ready for me at 2.00 pm and so I’ve been asked to come in for 6.00 pm. It’s still OK to eat as usual before then as they will be ‘starving me on the ward’.

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!

2406-how-prostate-cancer-is-diagnosed-t3a_250x229However, 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 http://prostatecanceruk.org/media/2491080/2796-locally-advanced-prostate-cancer.pdf

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: http://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit

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

Prostate update

I had my MRI scan on the 28th January but heard nothing for over two weeks. I eventually phoned to see what was going on and heard that the scan had not been seen by the multidisciplinary team yet. A week later I phoned again to be told that there was no change and I would remain on active surveillance. I got a letter to this effect on the 18th February recommending staying on active surveillance and that a blood test would be due in three months, i.e. mid May. So all was well. However, on the 25th March I received another letter saying the MRI scan results had been reviewed and that certain features warrant further discussion and targeted biopsies. This was immediately followed by another letter with an appointment for the 21st April for the procedure when I would be away in Norfolk for a family holiday. I phoned Ian, my contact nurse, to find out what was going on and he explained that their usual expert scan interpreter had been away and someone else had looked at it and said all was well. Since then the main person had returned and reviewed the scan and decided all was not necessarily well. I  don’t know yet whether the first interpretor saw the same thing and thought it insignificant or whether they missed something altogether. Either way this was a bit of a shock. Ian suggested I skipped the discussion with the consultant, Mr. Singh, and we booked an appointment for the biopsy for as soon as I got back from holiday. I opted to have the discussion first as I wanted to be sure another biopsy was really necessary at this time and whether it would be reasonable to continue with blood tests for the moment. So I’ll be seeing Mr. Singh Thursday this week. One of the big problems with prostate cancer is the uncertainty of diagnosis for the sort of low level cancer I have. I can see why some men opt for the surgery regardless and have done with it. If I have the biopsy and the result is that I have surgery this is likely to be in in late May or June. This could well bugger up my arrangements to be on holiday in early July, a second summer wasted.

Taking steps

In the last post I noted I had started cycling for fitness again in July 2012. This was very successful in terms of weight loss and by November 2013 I had got down to about 14 stone 7 lbs. It was then, partly because the weather was changing as winter approached, that I began to incorporate walking into my routine. This was reported in a post in my cycling blog Cycling, walking, hitting a ball in December 2013. I started doing specific walks round my immediate vicinity in the Aire Valley on the borders of Bradford with Leeds. Shortly after I began to use walking as an everyday form of transport often walking to Bradford centre and back for U3A meetings, or to Shipley and back for my U3A reading group meetings. Any trip of 3 miles or less is walked if I have the time or if longer and going by bus I will walk the first mile or so or the last bit of the journey. I try to walk every day that I don’t wither cycle or play racketball, even if it is only for 30 minutes or so although I usually manage up to an hour. The Garmin Vivofit I started using in December 2014, just over a year ago, has recorded about 2.5 million steps so far in 17 months.

Cleveland Way September 2012 011

Over the years I gradually put on weight and finally approached 18 stone about four years I still did some walking with my brother-in-law Kevin. The picture above was taken while on a walk along part of the Cleveland Way near Whitby in September 2012, when I was about 17 and a half stone. We didn’t do more than about 8 miles a day and, despite wonderful weather and scenery and some great evenings in pubs listening to live music and chatting with the locals, the trip was dominated by aching legs and sore feet more than anything else. This was deeply disappointing as I used to find walking a very enjoyable and rewarding activity. This greatly added to my motivation to get fit and lose weight for my retirement. Now Kevin and I are planning some longer walks. In fact last September 2015 we had a few days walking round Malham and part of the Pennine way covering, on one day, about 12 miles. By then I was down to about 13 stone so a very different story!

 

David Bowie

It is now the second day after the announced death of David Bowie at the age of 69 from liver cancer and the media and social media frenzy continues unabated, not surprising given his iconic status. Equally unsurprising there has been little if any reference to his flirtation with fascism in the mid 70s, none in the broadcast media a far as I can tell and only a passing reference in a couple of articles in the broadsheet press. But for my generation David Bowie had significant political impact in the 70s when he expressed the view that Hitler was the first rock star and Britain needed “an extreme right front come up and sweep everything off its feet and tidy everything up” in an interview with Playboy magazine (see article on this in the The Music Unions social history web site – David Bowie’s “Nazi” salute). It was this and the more virulent racist tirade of Eric Clapton that led to the Rock Against Racism movement and led to many of us getting involved in the Anti-Nazi League. Unlike Clapton, Bowie did distance himself from his remarks as early as 1977 claiming his flirtation with fascism was a result of his being “out of my mind, totally, completely crazed” at the time. Much more recently he has been praised for his anti-racism stance, for instance when he berated MTV for discrimination against black artists http://usuncut.com/…/bowie-remembered-legendary-music-effo…/ For over 40 years I have been a fan of his music but always a little ambivalent about the man. The dark days in the 70s of the National Front can’t be ignored. Hopefully Bowie’s legacy on the political front will not just be as an instigator of the the anti-Nazi moment but as an influential anti-racist.

Prostate cancer and excercise

There was a news item on the BBC Today programme Thursday last week on some research being done on any possible connection with exercise and the speed of development of prostate cancer in men that have been diagnosed with a Gleason score of 6 or 7 and on active surveillance. This is the PANTERA study. Details of the study and how to volunteer to be a subject can be found on the Cancer Research website. I fit the criteria to join the trial on every count except I already exercise beyond the maximum specified in advance of the study, more than 90 minutes per week of moderate intensity exercise. However, I was sufficiently interested to contact the lead researcher, Liam Bourke, by email. I asked if there if there is any information on the exercise regime required of the supervised group and whether they will be given any advice on nutrition. I was also interested in the conduct of the trial, in particular how if at all the ‘self-help’ group will be monitored for any level of activity they may decide to adopt in the light of the information pack you will be giving them and what that information pack consists of.

Dr. Bourke’s reply contained details of the exercise regime: Participants will be asked to attend two group-based supervised exercise sessions a week, comprising up to 45 minutes of aerobic exercise. Exercise intensity will be 65% to 85% of age predicted maximum heart rate or 12 to 17 on the Borg rating of perceived exertion scale, in episodes of 20-30 minutes of continuous exercise for the first 8 weeks, progressing up to 45 minutes per session thereafter. Gym based aerobic exercise training will be conducted using standard ergometers e.g. stationary cycles, rowing ergometers or treadmills. In addition, men are required to undertake self-directed two exercise episodes of up to 30 minutes per week, using an exercise log book and heart rate monitor to objectively record independent exercise behaviour and support adherence and compliance. They won’t be providing any nutrition interventions. The care pack for subjects in the group not undertaking regular supervised sessions is the standard Macmillan move more information pack, available free from McMillan Cancer Support. This comparison group’s exercise behaviour will be checked via standard questionnaires and any change in fitness by sub-maximal treadmill testing.
I have now joined the gym at my squash club and aim to replicate the 2 supervised sessions a week 20-30 minutes for 8 weeks and thereafter building to 45 minutes. I will not do the additional unsupervised sessions of 30 minutes per week as I think I will already be doing enough with cycling, walking and racketball!

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.