Friday 9 October 2020

My Toughest Project

Not everything is as easy to fix as downloading a patch and re-booting the OS.

Sometimes you need a lot of specialist help.

This is certainly the case with any type of cancer.


I think most of us gradually slow down as we get older. So I didn't suddenly realise that my 'stream' was slowing down when I urinated, or that maybe I was having to urinate more frequently.
In men, both of these conditions can be an indication of problems with the prostate, and the first step towards diagnosis is either a digital examination (not as high-tech as it sounds) and/or a blood test. As my wife and I were both due for a 'general' set of blood tests just before last Christmas (where they check for a number of conditions) I thought I'd wait on the results.
However, the suite of tests did not include the PSA test used for prostate diagnosis. Then we had Christmas  ...then we had Covid-19 lockdowns I didn't get around to having the PSA test until this summer.

the PSA test

The Prostate Specific Antigen test (PSA) was described to me by a specialist as the most unreliable test in the world. Nonetheless, my score of 19.4 was well above the threshold of 12 where an urgent examination is required.
So they started me on a hormone medication called Bicalutamide, which starves prostate cancer of testosterone and effectively stops the growth of any existing lesions (what I would have incorrectly called tumors).
Then the next step was an MRI scan (nobody wanted to perform the digital exam because of Covid...Hurrah!). I probably could have built my own scanner using a Raspberry Pi and a bit of Gambas code, but I didn't really have the time!

One other thing to say about the PSA test, is that if it turns out that you do have prostate cancer, they then use frequent PSA blood tests to determine the effectiveness of any treatment, as this then appears to be a very sensitive measure. This seems counter intuitive to me, because if its normally such a poor indicator, whats to say that the level wont start drifting for other reasons, even if you have cancer?

a scan, is a scan, is a scan

Having had an MRI scan on my head a few years ago, I wasn't bothered by having one on my pelvis. I'm not sure why it would bother any adult, but I know some people get freaked out by this very big, very noisy machine. The results confirmed that I had a widespread problem in my prostate, but initially it looked like it was self contained.

Scan #1 was soon followed by scan #2, a nuclear bone scan which was to try to determine whether the cancer had spread to my bones. This scanner was another interesting piece of kit, and much quieter than the MRI.

Scan #3 was a CT scan. This involved fitting a cannula to my elbow and once again laying on a moving bed which (hopefully) accurately positioned me during the scan.
During the scan the machine tells you when to breath normally and when to hold your breath. The display includes a count-down timer (10s) and two cartoon head icons, one trying to hold its breath, the other breathing.
The operator also warns you when the machine is about to inject a 'dye' into your blood stream. This is a contrast dye and, as this is an x-ray scan, I assume the dye contains a metal solution or possibly something that will flouresce when excited by radiation. The radiographer had warned me that as soon as the dye is pumped in I would experience hot-flushing, especially in my throat and my back-side.
She also said "You may think you are going to the toilet, but you are not". Fortunately she was right. It was certainly a weird sensation.

...and the biopsy was fun

I'd carefully read the documentation about this procedure and what you can expect on the day. The biopsy involves taking a series of small samples from your prostate, using some kind of needle they jab through your skin, while at the same time they stick a sonic navigation device up your anus.
According to the 'script' my initial meeting with the anesthetist should have involved a discussion about the various options (e.g. local anesthetic, epidural, general & so on) and a joint decision on which to use.
What actually happened was that he said "...and today we will be giving you a general anesthetic".
When I asked about other options, he crossed his legs, gave a sharp intake of breath and said "ooo, you don't want to be AWAKE do you? When I just think about what they are going to do to you, it makes my eyes water."

I instantly took a liking to this guy. So, much to my relief, we agreed it was going to be a general anesthetic.

On the day, I arrived into the operating theatre on a bed-cum-trolley, flat on my back. Although there were a lot of people in the room, all I could see was the ceiling and the two people in masks closest to me, on either side of the bed: the
anesthetist (I'll call A1) and his assistant (A2). They were brilliant, just like a comedy double act. I couldn't tell you all the things they said that made me laugh (too rude) but one thread went like this:-

A1: "In a moment, someone is going to tape up your crown jewels..."
A2: "...because you wouldn't want anything to accidentally happen to them, would you?"
A1: "...well, let's just think about this for a moment; the current financial compensation for a single finger nail is about £1,000..."
A2: " if anything unpleasant did happen down there, you'd be financially secure for the rest of your life!"

With a canula attached to the back of my hand and my legs in stirrups, A1 injected the first of two liquids into my hand. As the second was going in I heard;
A2: "are we doing a general today?"
A1: "No, we haven't got time, the surgeon is in a hurry, he's running a bit late..."
  ...and I was gone.

I went from fully conscious to fully unconscious in about 4.5nanoseconds.

And in less than a second, I heard someone saying "...Mr Davis, Mr Davis..."

I opened my eyes to find I was somewhere else, maybe a recovery room. A young lady of black African descent wearing a mask was looking down on me. I thought she had the most beautiful eyes I had ever seen.
And then I started to worry; did I just say (out loud) that she had the most beautiful eyes I had ever seen?

I tried to assess how much time had passed since they put me under. I was probably out for no more than 40 minutes. I now felt good, I felt happy, although the following day I felt like I had accidentally sat down on a pineapple.

diagnosis & treatment plan

Fortunately prostate cancer is the most common male cancer in many developed countries, so our medics have a lot of experience in dealing with it. A multi disciplined team (MDT) review my case once in a while and agree on the next course of action. The oncologists also discuss each case with experts from other regions within the UK.

I'm not going to repeat a lot of information about prostate cancer that is readily available on the internet. So when I say that my Gleason Score was 4+5=9, its an indication that it is a high-grade cancer.
Although the initial indications were that it was contained within the prostate, a sharp eye oncologist pointed out what is possibly a slight enlargement to one of the lymph nodes. Various research and field studies point to a treatment plan which starts with chemo and is then followed by radiation treatment (...yes, I was hoping to avoid the chemo).

So the first of 6, three weekly chemo sessions start next week. After Chemo, I get a break of maybe 4-6 weeks before the start of 37 sessions of radiation.
In the meantime I'm transitioning from Bicalutamide to a regular injection of small Zoladex capsules into my stomach, which stop the production of testosterone completely. These injections will be repeated every 3 months for at least 2 years.

so, what's it like?

Its very difficult to take an illness seriously when it doesn't give you any pain or discomfort. And that's probably one of the reasons that men don't ask for a blood test, and why its often allowed to go on too long and spread to other parts of the body.

I had my first PSA blood test about 15 years ago, and it was fine. But like many cancers, your chances of getting it go up dramatically, year on year, after you reach a certain age.
Photo by Christine Johnstone

So, even though its an unreliable test, I'd recommend men to get tested regularly once they hit their 60th birthday, or if they can no longer piss over a 5-barred-gate.

Some say I have a positive attitude towards my illness. I don't expect to die in the near future, but when I do, it probably wont be this particular cancer that takes me.
I've faced each step in this process so far with an open and curious mind. Meetings with MDT members have been particularly interesting (a bit like project meetings when I was still working in industry). Its just that now, I am the project.
I'm interested in what is happening, but I don't want to hear any horror stories from others. I will experience, whatever I experience, when the time comes.
I just face each examination and each treatment as it comes, and so far its been an easy ride.

See also: Prostate Cancer: my chemo experience

See The Prostate Project video: Get Tested

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