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.

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 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

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.

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. 

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.

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.