The Prostate Diaries: Active Surveillance: Living with Prostate Cancer.

Updated: Mar 5, 2020

Prostate Cancer!!! The big C! The silent killer! The cancer that takes away your manhood and your life!

Most of us don’t even know we have a prostate until something goes wrong! Until the doctor (or in my case nurse) says I’m sorry the test was positive you have prostate cancer. For those who aren’t, sure the prostate is a walnut sized gland that sits between your backside and your testicles. It secretes fluid that nourishes and protects sperm. During ejaculation, the prostate squeezes this fluid into the urethra, and it's expelled with sperm as semen.

I was diagnosed with prostate cancer at the age of 48, and at 54 I’m still here and so far so good.

Photo by Phil Rocker.

My Cancer story:

So how did it begin? Well as with many of things in my life it began with my cock! I kept peeing and I mean all the time. It got to the point where I was getting up two or three times a night. I was 48 and as far as I was concerned too young to be having these types of problems! I went to my GP. Amongst other things he checked my prostate (not the most dignified of examinations but nothing to be frightened of - a quick probe, with a gloved finger up my back passage) and found nothing wrong. In fact he assured me that everything was OK, but I wasn’t having it. So I pushed it and within a week or so I was at my local hospital having a blood test.

By this point the night time peeing had stopped. I was feeling OK. In fact as far as I was concerned the problem had solved itself. I only went through with the test because I'd made such a big fuss about it. I expected everything to be fine. It wasn’t!

A couple of days after the blood tests I got a call from the doctor. The test results indicated that I had a raised PSA level. PSA or prostate specific antigen (PSA) is a protein produced in the prostate, elevated levels of which can be an indication of the presence of cancer.

I can’t remember now whether I had another blood test and trip to the doctors, but let’s just say shortly thereafter I found myself back at my local hospital in front of a special prostate nurse (and yes they do exist). I was nervous but still confident that I was ok.

I was wrong!

It’s been five years but I can still remember my stomach flipping over and my balls shrivelling when the nurse said I’m sorry but you have prostate cancer. In my head I was screaming "What! Me! Cancer! No! Am I going to die? Is this the end of my sex life? What I actually said was, “are you sure?" She was!

I had a PSA level of 4.8. Not the highest ( some people I know have had reading into the 20s) but high enough to indicate that there was definitely something wrong. To find out what the nurse said that they were going to need to take some samples. This is where things got sticky!

Taking a sample from your prostate. There are two basic ways of taking samples from your prostate:

A trans-rectal ultrasound (TRUS) guided biopsy, where the needle goes through the wall of the back passage.

A transperineal biopsy, where the needle goes through the skin between the testicles and the back passage.

My TRUS biopsy experience:

This is the most common type of biopsy in the UK and so some weeks later I found myself lying on an examination table, with my trousers down, my knees around my ears and an ultrasound probe up my backside.

They use the ultrasound probe to scan the prostate and work out exactly where to take the samples from. An image of your prostate appears on a screen apparently. I couldn’t see because it was behind me.

Once the doctor guiding the probe had established exactly where he wanted to take the samples from, a local anaesthetic was injected into the area around my prostate and the samples were taken. This was done using a needle which sits next to the probe. It's pushed through the wall of my back passage and into my prostate. 12 cores or tissue samples were taken.

The strangeness of this experience was only magnified by the doctor who as he did his work, kept talking to me about Arsenal football team! I don’t even like Arsenal! Anyway after about 10 minutes it was done.

Now they say because it’s a local anaesthetic you can drive home on your own! Here’s a tip don’t! I did and it wasn't smart. The procedure itself was uncomfortable, I was left in some pain and be honest I was exhausted. So word to the wise. Take a friend. Don’t expect to go to work the next day, it’s all a bit sore and swollen down there. Oh and that prostate gland that I never knew I had, I did after that. Immediately after the operation it swells, and you get blood in your pee and in semen. Frightening but it does settle down after a few weeks. Oh another tip. Re semen, don’t do anything or at least don’t climax until the swelling goes down. No matter how tempting the offer! Firstly, brown semen doesn't look good! Secondly and perhaps most importantly, it hurts to ejaculate. I mean it really hurts. So take it from me, if you do have to have a prostate biopsy restrain yourself until your prostate has had a chance to recover.

My results: Well when the results came back I had 4 cores (samples) out of 12 which showed signs of cancer. I was diagnosed as having a small slow growing tumour inside my prostate. I met with a consultant who told me I could have one of the more aggressive treatment options (more about these and their side effects in later blogs) up to and including the removal of my prostrate or I could take what is known as Active Surveillance.

The thing with my type of prostate cancer is they don’t know how fast it’s going to grow and what if any impact it is going to have on you. So the doctor offered me the option of wait and see. To come into hospital and have regular blood tests, monitor the tumour. If it starts to grow, then take action, but until then leave it alone.

I chose Active Surveillance.

That was 5 years ago and fingers crossed so far so good. There have been other biopsies and quarterly blood tests but so far no need for further treatment. Yes things can be uncomfortable and there are moments ( mostly) before I know the results of my quarterly tests when things can be a little overwhelming but it’s certainly not the end of the world. Even though I haven’t required treatment yet, I’m glad I know it’s there. It means that if something changes I can be on top of it before it gets too bad. Any treatment option is better the earlier you start it.

So If you’re over 50 (or not) and worried about prostate cancer get yourself checked out. It’s free and it could save your life!

Even if you are diagnosed with prostate cancer it doesn’t have to be the end of your world. I know not everybody’s journey is the same and I have been lucky, so over the coming months I will be reaching out to others who have been living with prostate cancer and asking them to tell their story in blog posts that will appear on this website. I will also be bringing you details of the latest treatments and breakthroughs. If you have concerns talk to your doctor. If you want to talk to other men who are dealing with this issue check out our Man Talk forum.

Author: JG

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