Rog T's Cancer Blog - It's Cancer time again!

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? 

It's that time of the year again. In January 2016 I had a HiFu procedure to treat a change in the cancer in my prostate gland. The treatment was successful, however I have to have regular PSA tests and an annual MRI scan and consultation, to ensure that the situation is stable. This is done annually and with the time between MRI's and consultations, that time of year has come around again. Yesterday I went down to UCH for the scan. Anyone who has ever had an MRI will know it isn't the most pleasant of experiences. Luckily I don't suffer from claustrophobia, so it is just a bit uncomfortable. Last year the scan looked good, nothing to worry about. For a year, there is little thought given to the matter. But having had the MRI, now I am in that season of worry, waiting to see the consultant to find out if it is all still behaving.

Not many people realise this, but cancer is classified as a life long disability once you've had a diagnosis. Anyone who has had successful treatment and is remission knows that the worry never completely goes away and the period between the tests and the prognosis is the worst time. My consulattion is in a months time on the 8th May. In the five weeks between now and then, I will get ever more nervous about the issue. It will play more on my mind and my wife tells me I get increasingly ratty as the day approaches. Last year when I got the good news, she told me it was like I'd had a cloud lifted from me.

As someone who plays guitar and football, there are plenty of activities I can do to take my mind off the issue and work is certainly a distraction, but when you get home and sit down, and start to think about it. You can't help but think whether there will be a change, whether more treatment will be required, whether once again you will have to confront the issues of your own mortality. I don't want to be over dramatic. It is highly unlikely that this will say "you've got six months", but there are all manner of possible life changing side effects of treatment for prostate cancer and in many ways, I fear these more than I fear death. Since my diagnosis, this is something that I've discussed with dozens of fellow sufferers. I don't think that the medical profession adequately recognises this and I certainly dont think that quality of life is high on the list of considerations of surgeons, when considering the situation of patients. I would like to see consultations following MRI's and other tests as close as possible to the date of the tests. This would at least mean that the period of anxiety would be minimised. We are lucky to have the NHS and the costs of my treatment thus far would have been prohbitive for most people in the UK. Having seen the NHS at first hand, I am always both in awe of the amazing people who work for it and frustrated by the bureaucracy and poor management of many aspects. Just one example of this is the MRI I had yesterday. I received through the post an appointment and a health questionaire. This I had to fill in and hand in on arrival. In this day and age, this should be online by default. Of course, if someone cannot access online forms etc, they should get a paper copy, but I for one would much rather do an online form, and the costs would be far less.

This would mean that if you ticked any box that was of concern, this would be flagged up by the system before the procedure started. Think how many forms and bits of paper there are in the NHS. I believe at least 70% of people would prefer an online system. It is more convenient and this would save billions. It would mean less waiting around and more people to do the important clinical side.

I've calculated that since 2011, I've probably spent a week in total hanging around waiting in hospitals etc, I can't remember any time where I was seen at the time on the appointment. As a fan of the NHS, I accept that this is part of the deal, but there is no reason why things could not be made more efficient. Surely that would benefit everyone?