Rog T's Cancer Blog - Nailing a common misconception

For those of you who are regular readers and have read the previous posts on Cancer, you can skip this first paragraph.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 51 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 againg 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. 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?

I wasn't really planning on writing another blog in this series quite so quickly after yesterdays entry, but as I am sure a few of you will have twigged, I am a man on a mission with this series of blogs. This mission is as follows

I want to promote screening and early detection of cancer, share information about treatments and debunk the myths that surround the disease. 

Todays part of that mission is to debunk a myth. For those of you not familiar with the blog and Barnet, there is someone I don't get on with, who takes great delight in taunting me about my cancer status. To me it is like water of a ducks back, I have more important things to worry about in my life, wife, children, band, business. But the latest tweet has given me an excellent opportunity to help dispel one big misconception about living with cancer.

Brian Coleman ‏@BrianColeman251 10h10 hours ago

@Barneteye shame the cancer drugs are making you even nastier and more obsessive than ever

Brian has made one of the common mistakes that many people make when thinking about living with cancer. He has assumed that because I have cancer and will be having a procedure early next year, I must be on powerful drugs, which are sending me a bit cranky. People like myself who have cancer detected due to a "well mans checkup" are likely to be low risk (Gleason Score 3+3). For these, the NHS's preferred and clinically most sensible course of treatment is to do nothing to treat the cancer. The NHS will simply monitor your PSA levels and take biopsies to ascertain whether the disease is stable or progressing. This is the situation I've been in since November 2011. 

When a Prostate cancer is detected early, it is relatively straightforward to monitor. When the cancer starts to develop and progress, such has happened to me (my Gleason score went up to 3+4 after the last biopsy) then treatment options are considered. For me, none of these included drugs. In fact I am not aware of any suitable drug based therapies for a localised, medium risk case such as mine. The options I had been offered were surgery, radiation and HIFU (High Intensity Focused Ultrasound). 

I have opted for HIFU. The doctor informed me that it is a day procedure. I will have 2 weeks recovry time off work and a month off playing football. That is it. I will presumably have antibiotics and pain killers around the time of the treatment. That will be that. The biggest risk to me is that the HIFU doesn't work and I'll have to have a follow up treatment. I cannot pretend that it all sounds pleasant, it doesn't. If I wasn't dealing with a potentially life threatening and limiting disease, there is no way I'd be having such things done. But I have two friends who are living with a Prostate Cancer that has spread into their bones and invaded their bodies. They are having hormone therapy and are simply managing the disease. Both are doing well and coping, but both would give the world to be in my position, where the disease is treatable as opposed to managable. 

What worries me about the misconceptions which the likes of Brian inadvertently spread is that it scares people. When Brian goes down to the Rotary Club for a G&T and tells his friends that this awful blogger has been sent round the bend by powerful anti cancer drugs, how will they react? Just suppose their doctor urges them to have a PSA test as part of a general wellbeing checkup. If they think "Oh yes, but I remember Brian saying that blogger was sent bonkers by the drugs after he had that" will they be so keen to get checked out? If Brian was simply one person with a misconception, I wouldn't be moved to comment, but his perception seems to be the norm. One of the most common reactions I get when I tell people that I am on "active surveillance" and the NHS are simply waiting for the disease to progress they say "It's those bloody Tories cutting NHS budgets, it's terrible".  I then have to spend half an hour defending the NHS and the funding for cancer treatment and explaining that "active surveillance" is by far the best clinical alternative for people in my position. 

So to sum up. If someone tells you they have been diagnosed with cancer, don't assume they are on medication. Don't assume that they are going to die or even have a vastly diminished quailty of life. Don't assume they won't be doing what I will be doing in an hours time and playing football. If they tell you, it is probably because they are hoping you will give them support. Whatever the prognosis, listen to what they have to say. Do not make assumptions. If they say they have a treatable cancer, that is because they have a treatable cancer. Doctors do not lie. If the news is worse, then they will need love and encouragement. I am extremely lucky. For all of my consultations, my wife has attended with me. I know some people who "spare" their nearest and dearest the pain of having to listen. I would suggest that in general it is better to take someone along for emotional support. If a friend doesn't have anyone to take, maybe you can offer to go with them. But most of all listen and don't make assumptions. When people see comments such as Brians, they assume there is an element of truth in them. They assume that the situation is far more serious than it really is. Whilst I am really not that bothered, when I get phonecalls from friends who have heard I am in a bad way, that is the downside. Each one means I spend half an hour reassuring them that I'm fine (and i'm sure they don't really believe me). But that is the truth and there are many people in my situation.