Monday 29 August 2016

Rog T's Cancer blog - HIFU six months on


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 53 years 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'm now 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), albiet with small mass. 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, which means that the direction is positive . I've no symptoms and sadly for a few people, if I'm gonna die soon, it won't be from Prostate cancer. Got the picture?

It is now six months since I had the HIFU procedure and this week I had my six monthly consult. This was done by telephone. Part of this process was to fill in a long questionaire about my plumbing. If you are not interested in this, skip the rest of this paragraph. As I am participating in a clinical trial of the HIFU procedure, it is important for them to collate statistics. So amongst the questions I was asked - How many pads a day do I use for incontinence. I am pleased to say the answer is none. I wasn't incontinent before the procedure and I am not now. It also asked several questions about sexual function. Can I maintain an erection, can I have sex with out taking viagra, can I have sexual intercourse. None of these were problematical before the procedure and none are now. This information is used to collate statistics and the people who are being offered HIFU are given the percentages of people who have not had an impairment of these functions.

The next aspect they check is the PSA level. This was 4.0 in May and has fallen again to 3.7, which again is positive. I was informed that I'll have an MRI scan in Jan/Feb as a follow up. So all in all medically the procedure looks to have been successful. It is worth mentioning that the procedure did not remove all of the cancerous tissues. The process was targetted at the more aggressive cancer that was present in the lower left hand quadrant of the prostate. This had a gleason score of 3+4. This did not address the issue of the "low grade" cancers that are 3+3 and present elsewhere in the prostate. The view of the HIFU team is that these are not worth addressing and can be monitored via PSA tests etc. It is very much a quality of life argument. If I was incontinent and did not have an active sex life, I'd probably have opted for a radical prostatectimy but at age 54 I was not ready for the likely side effects of impotence, incontinence and infertility. 

But as I've mentioned, there is another side to the story. How have I been feeling generally. For the first three months following the procedure I was very tired and felt lethargic. I scaled back on many of my working and life commitments. I have written far less blogs this year and put far less efforts into the blog. Thats not to say I don't take it seriously, but I've not had the energy to sit up till 3am every night researching the effects of the latest council policy. I am quite pleased that despite this, I've still managed to be influential in shaping events, especially with the Freedom Pass debacle. 

I've also had to take the foot off the gas slightly with my music interests. I had hoped to have released the False Dots long awaited album by now, but just having the energy to give what it needs has proven illusive. I would say that following our summer holidays to Thailand and Lourdes, I'm now more or less back to where I want to be. I want to lose some weight, this is recommended for people with low grade prostate cancers. I'm making some effort to drink far less (not always successfully).

I think that like many people, I've found 2016 to be a very difficult year. The deaths of Bowie, Lemmy, Ali etc all have been difficult to take. It would have been a rotten year even without having to undergo treatment for cancer! whilst I know for some it is the best thing since sliced bread, the fact that IMHO my fellow countrymen have voted for Brexit and those in America have decided to select Donald Trump as a presidential candidate really makes me fear for the future. I'm not saying this to be political but as someone with children, I want to leave them a life on a safe and secure planet, where they have a good life and great future. For me (and I accept others feel different), both of these things are a big worry. They say that stress can play a big part in triggering cancers. whilst neither of these events are at present genuinely stressfull, I do worry where they will lead us in a few years.

Being confronted with your own mortality does focus the mind! I'm 54 and my ambition is to live until I'm 108, so I'm half way through my expected life. I fully expect medical science to have got to grips with cancer in the next 20-30 years (assuming as a race we don't destroy ourselves). I take the view that so long as I'm sensible I will beat this, with some help from the NHS! So I am in a positive frame right now. So all in all, I guess that as six month checks go, it's a pretty good one.

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