Friday 25 September 2015

Rog T's Cancer Blog - What goes up, must come down?

Lets play PSA roulette?
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 gives 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.  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?

In February, I'd seen a reasonable jump in my PSA levels. I wrote a couple of blogs detailing how I felt.

Rog T's Cancer Blog - Friday the 13th, The day of doom?  and

Rog T's Cancer Blog - Part II - Friday the 13th, The day of doom? The NHS crisis bites

But that seems a long time ago. Since then, I've been booked in for yet another biopsy. This one is a more comprehensive version. It requires a general anaesthetic, I'm having that next week. And I got my latest PSA today, it is 4.6. This is down from 5.5 in February. Strangely I'd forgotten that I was 5.5 in February. I thought I was 4.0, so when he pointed out that it had gone down, I was mildly surprised. The term "stable" was used. When he said "stable", I though of horses bolting. Last night, I had a beer with a friend who hasn't had such good news. He is going in for a couple of days of surgery. He recently had a biopsy, which was clear, but a CAT scan showed up irregularities on his bladder and his urethera tubes. He'll be having surgery in mid October. One of the benefits of writing this series of blogs is that I believe it is beneficial for men to discuss health problems and share information. Many are. I believe the more information we have, the better the personal decisions we make. I also do not have 100% trust in the medical profession, so knowing the questions to ask and when to raise flags and say "whoa, hold on" is important. Cancer is a rocky ride and many aspects of the journey are scary. Talking to people with experience of such issues is vital, but how do you start a conversation if you don't want to talk about delicate matters.

The truth is with Prostate Cancer, men have things shoved up there bums on a regular basis. Most men do not wish the world to be aware of this fact. So they keep schtum. As a result, they cut off access to support networks and help. They miss out on helpful information as to how to mitigate some of the problems (for instance if you think the experience may be traumatic, ask for a general anaesthetic). If your PSA has gone up, but your doctor seems unconcerned, if you can't discuss your fears with someone else, how can you deal with them? If you have been prescribed hormone therapy and you've lost your sex drive, it can be a very lonely place. Since I started this blog, I've talked to dozens of fellow sufferers. Well over half of the guys I've spoken to have never spoken to anyone. Some have only spoken to me because their wives have raised the subject and I could see they are hellishly uncomfortable. In every case, they've initially been reluctant to talk, but once they get over their embarrassment, they can't stop. Cancer is such a scary concept, that they've tried to lock the mental demons away. When the flood gates open, all manner of strange concepts and misconceptions appear. Many of the people I know who are sufferers have lost parents or grandparents to the disease and this adds a whole other array of fear and dejection. Often though, unlike the lost relatives, they are in a very treatable position. Most will die with, not of the cancer. So why live with demons locked away inside? I guess the next episode of this particular series will be after my next biopsy. One last point, I noticed is that during the course of my eperience with PC, my PSA has gone down nearly as many times as it has gone up. It is not significantly higher than it was in November 2011. So despite four years of fear, worry and tensions, I am sort of where I started. A lot of worry for nothing? We shall see in the coming weeks.


caroline said...

Men can be very dismissive when women discuss their health concerns but maybe it's time that they recognised the benefits of sharing experience and knowledge.

Venomator said...

I am 62 and have cancer, although mine is Lymphoma, I am halfway through chemotherapy, which has had very visible effects on my physical appearance! For starters, most noticeably, I am bald as a coot, although colts aren't bald so that is a pretty stupid analogy, where I did have a reasonable covering albeit white and receding. Anyway, I generally read your blogs for all things Barnet, but have read your cancer posts too. You are absolutely right about the male approach to personal discussion on the topic. A friend and colleague has been living with prostate cancer for a couple of years. It was not until I mentioned my Lymphoma to him that he told me of his disease. Mine cannot be hidden while my late shines out as it does, so I have told anyone and everyone who is interested that chemotherapy is responsible for my new hairdo! Funnily enough, I have been completely blasè about my condition, although I never, in a million years, thought I would be a cancer patient. How wrong was I! It has affected my nearest and dearest much more deeply and that has helped me maintain a positive and almost nonchalant attitude to my fight. Staying focuses on positivity can be a challenge, especially as chemotherapy has made me more poorly than the cancer itself (we only discovered it because I eventually visited my doctor after months of putting up with an annoying thickly cough!). So, yes, it is good to talk whether you as male or female, whether you have cancer, or know someone who does. In my experience, patient or observer, do not ever be afraid to broach the subject with someone you know. Generally speaking a patient will appreciate the opportunity to talk to someone other than their consultant and non-patients will learn... It's good to talk!