Rog T's Cancer Blog - When sex = death what would you do?

For those of you who are regular readers and have read the previous posts on Cancer, you can skip this first paragraph. I write this blog because knowledge is power and if you know what you are dealing with, you have more weapons in the locker to fight it. It is a personal view, I'm not medically qualified. This is for the sole purpose of information for those who are interested.This is the latest installment in my occasional series about how I'm adjusting to living with a big C in my life.  For those of you who aren't, here's a quick summary. I'm 54years old and in October 2011 I  had a prostate biopsy following two "slightly high" PSA tests - 2.8 & 4.1. The biopsy took ten tissue samples and one of these showed a "low grade cancer" which gave me a 3+3 on the Gleason scale. I was put on a program of active monitoring.  In early February, I got the results of the a PSA test - down to 3.5 and an MRI scan which found absolutely nothing, two more tests in 2012 were at 3.5 and 3.9, in 2013 my test was 4.0, Jan 2014 was 3.8, August 2014 was 4.0,  February 2015 it was  up to 5.5  and my latest in August 2015 was down again at 4.6. In October 2015 I had a transperinial Prostate biopsy, that revealed higher grade cancer and my Gleason score was raised to 3+4 (Small mass + more aggressive cancer). On 22nd Jan 2016 I had HIFU (Hi Intensity Focused Ultrasound) treatment at UCHL). My post procedure PSA in May was 4.0 which was down, followed by 3.7 in August, and 3.5 in October  which means that the direction is positive . However in January the follow up MRI revealed "something unusual which requires investigation" After a follow up biopsy, it appeared this was nothing to worry about. My two most recent PSA tests were Ok (3.7 and 4.6) and an MRI scan in March was very positive.  I've no symptoms apart from needing to wee quite regularly and sadly for a few people, if I'm gonna die soon, it won't be from Prostate cancer. Got the picture? 

Back in April, I wrote a blog detailing my latest MRI scan. Since then I also had a PSA test, which was stable at 4.7. On Wednesday, I made way with Clare to UCH to see professor Emberton, my consultant, for my annual review. Anyone who had had treatment for cancer will know the feeling of dread in the the pit of your stomach as this date approaches. All manner of thoughts pass through your mind, most of them are fearful and dark.

When I had treatment in 2016, I had three options. The first was a radical prostatectomy. The upside of this was that if it was successful, for my condition it would be a complete cure. The downside was that there is a strong likelyhood of impotence, incontinence and infertility associated with this. The second option was to do nothing and take a chance. The cancer was still reasonably small and had not started to spread beyond the prostate. No one could advise on when it may spread, when it may start to have symptoms and when it may kill me. The upside was that there would be no impact on my lifestyle and something else may kill me long before the prostate cancer. The downside was that no on could advise and I realised that it as I was 53 at the time, then unless I started drinking a bottle of scotch a day, the hope something else kills me first was very much a lap of the Gods issue. The thought of having my sex life ended at age 53 horrified me. I discussed it with my wife who assured me that as far as she was concerned, she'd rather have me around and not fully functional than dead. I've got to confess that I wasn't 100% sure I believed her. The concept of being less than a full man was horrific. 

After much soul searching, I opted for option one. After a further discussion and some research, I became aware of a third option, This was HIFU treatment. This is an experimental procedure, performed at UCH by professor Emberton and his team. I had been advised by the team at Barnet that HIFU was not suitable for my condition, but as Clare said, there is nothing to lose by having a conversation. We went to see Prof Emberton and he explained the procedure and the risks and benefits. The biggest risk in my case was that what was being proposed was not a cure. There would still be low grade, non aggressive cancer present. The treatment would address the aggressive cancer. I would have to be continually monitored following the procedure. At some point in the future, further treatment may be required. The upside? The risks of impotence, incontinence and infertility are far lower. In effect, the treatment pushed the problem into the long grass. The way I saw it, with the advances in medical technology, if it pushed the decision ten years down the line, then the options may bother me less and also treatment options may have progressed. Professor Emberton also suggested that as I'd be monitored, further HIFU would be an option if the aggressive cancer returned. 

Back in 1981, when I moved to Stockholm, I attended an exhibition promoting breast cancer awareness. There was a long wall full of pictures of bear breasts. They were groups of three picture and there were dozens of them. The first one was a normal picture of breasts. The second was a picture of mutilated looking breasts, and the third was a picture of normal looking breasts, that on inspection had a few scars. I have to confess that as a naive 18 year old, I thought it was some sort of punk art. The curator of the gallery came up and started chatting to me. She explained that the exhibition was designed to persuade women that breast reconstruction surgery following a mastectomy was a straightforward procedure and women shouldn't refuse a mastectomy through fear of not being a proper woman anymore. I hadn't known at the time, but it was explained that women were dying due to the fear of cosmetic damage. I thought that they must be rather silly to have such fears and the exhibition made the point rather well.

Fast forward to 2016, I had come to realise that such fears are far less trivial. My greatest fear, and I have no reason to suspect that it was anything other than irrational was that I'd end up impotent, my wife would lose interest in me and I'd end up on my own with no prospect of a partner. Although I am handsome and have a sparkling wit (said with irony), I simply couldn't see why any woman would be interested in an impotent fool who was incontinent and smelled of wee. Having children, I felt that it would be unfair to put them through the stress of refusing treatment. HIFU was a way to deal with my fears and also deal with my immediate problems.

Of course, even with HIFU there is still a prospect of the dreaded side effects,, it is just lower. Fear eats the soul. The whole process was stressful, uncomfortable and an episode that I was keen to put behind me. Wearing a catheter for a week was far from pleasant. It took two months before it was clear how successful the procedure was. Fast forward to today, everything is normal, but the annual review is always a time of stress. So in we went. Professor Emberton is a brilliant man and talks to you as an adult with respect. The latest PSA was 4.7, which for someone with my age with a large prostate, was normal. We agreed that I'd manage my PSA tests as I have been. This means a twice yearly check. He said that if it went above 5.5, get another test and then contact him.

The MRI showed nothing to be concerned about, although as he said there were 'subtle changes'. I asked what these meant. He said "there are cells we worry about, cells we don't worry about and ones we are just not sure about". So I'd be back in a years time for another MRI and hopefully a similar conversation.

That's the problem with cancer, you never really know, but the fear has been kicked into the long grass for another year. Afterwards, we made our way to Marylebone High St and had an excellent late lunch in Fishworks. Two courses for £18, excellent chips and really fresh fish. A pleasant way to turn the page on this years chapter. I am lucky. One thing to mention. The NHS no longer does routine PSA tests. If I was getting my "NHS MOT" today, I wouldn't have known that I had prostate cancer. Three years on from my HIFU treatment, it occurs to me that I may have now been in the position where the cancer had spread and I was starting to display symptoms. My options would have been very different. The PSA tests were abolished as NICE deemed that too many men were having too many unnecessary procedures. I am one of the one in five men who's treatment was not unnecessary.

All in all I am blessed in many ways. I have a great consultant and great support. My cancer was detected by a test that is no longer routinely supported. I think men deserve better.