June 28, 2020 9 min read 1 Comment

During lock-down, I expected to discover something about myself - how I cope with periods of isolation, how to maintain focus and concentration for extended periods and how to keep my snout out of the fridge for more than 3 hours at a time. However, what I didn't expect to discover was that I had Stage 2 Prostate cancer.

As a reasonably fit 56 year-old - playing sport all my life, an ex-cyclist of middling ability, never smoked, not had a drink in years, no history of cancer in my family and a reasonably healthy lifestyle, I thought this only happens to other (older) guys. Oh, how wrong was I! 

The insidious thing about prostate cancer is that you often don't know you've got it, until it's too late. In the early stages, there's no pain, discomfort or alarm bells going off. However, it does whisper clues that you might be able to spot if you know what to look for. Here are the clues that I spotted and the steps I took. Disclaimer - these clues don't give any guarantee that you either have it or don't have it. 

  1. Questionnaire
  2. PSA test
  3. MRI scan 
  4. Bone scan 
  5. Biopsy

Questionnaire

I was doing some motorbike training in Feb 2020 and during the course, Simon, the training organiser told the group he has prostate cancer. He had the courage to talk about it and gave us all a questionnaire, suggesting we fill it in privately and see how we score. 

There were some urinary pattern questions on the questionnaire and I scored 21, which is at the low end of 'Moderate' risk. I had noticed some slight changes over the past couple of years, such as when I pee, the stream has become a little bit weaker over time. Not that I was looking for any change but it was enough for me to notice a small difference. Additionally, after I had a pee I often needed to go back a couple of minutes later and have a mini-pee to get rid of a few extra drops. I didn't think anything of it and thought it's just what happens to your body as you get older.

To be honest, scoring 'Moderate' risk was a bit of a shock, as Prostate cancer wasn't on my lock-down 'to do' list. However, it prompted me to get the ball rolling, speak to my GP and ask for a PSA test. The rest is history, as they say.

A questionnaire is easy to do but it's the least scientific method. However, it's a valuable early-warning system that something might be happening with the prostate. There are several variants of questionnaire and the one I've created below is a combination of a couple of them. 

Questionnaire

 

The questionnaire doesn't ask you to enter your name or any personal details, so you can take it in complete privacy. If you score 'moderate' or 'high' risk, consider speaking to your doctor and investigating further.

 

PSA Test

Your PSA levels are taken via a blood test and a high PSA score is an indicator that you may have prostate cancer. However, the results aren't perfect and can be 'false-positive', meaning a high PSA score leads to no cancer being found at all. Some causes of false-positive high scores are:

  • You have a larger than normal prostate and it produces more antigen 
  • You have had sex or ejaculated within 2-3 days of the test (keep it in your pants for a couple of days if you're having the test)

Normal values are between 0-3 and I scored 15, which is 5x the normal level. While this isn't mega high, it did warrant further investigation and the next stage was to book me in for a MRI scan. 

 

MRI Scan

The MRI scan is completely painless. The doctors inserted a cannula in my arm and injected a dye, which is absorbed by the prostate and picked up by the scanner. The scan itself takes about 45 minutes, and involves you lying still, surrounded by a huge magnetic doughnut and contemplating your fate. My results showed that I had two areas of suspicion, one either side of the prostate. These required a biopsy to identify what they were. At this stage, it's too early to confirm whether it's cancer or not. However, having been in the City for 18 years and a black-belt in smelling bullshit, the carefully chosen words used by the doctor suggested that things weren't looking too clever. 

 

Bone scan 

bone scan is a similar procedure to an MRI, but the stakes are ramped up. By this stage, my gut feeling was that I had prostate cancer and the last thing I wanted to be told is that it's spread through my body. The doctors inserted a cannula in my arm and injected me with gamma radiation - yes, I can now legitimately call myself the Hulk. The radiation is absorbed by the bones and any cancer cells show up like a neon light. The scan itself takes about an hour but then you have to wait for what seems like an eternity to get the results - it was a long week! Fortunately, the results came back clear and whatever was going on in my prostate was contained there. Some good news at last.

 

Biopsy 

If you scored moderate or high risk on the questionnaire, a high PSA test and suspicious MRI - if you're still reading this and need a biopsy, then things are getting serious. The procedure I had is called a transperineal biopsy and done under local anaesthetic. It's not the most pleasant experience I've ever had and I wouldn't want to repeat it - but it's just one of the things you have to go through.

Picture the scene, you're reclined in a dentist's chair, with your feet in stirrups. They flip the chair back so you're now head down, ass in the air and legs akimbo. Whatever shred of dignity you have left goes straight out the window. If any ladies are reading this, you're probably yawning and thinking "welcome to our gynaecological world" #respect

The surgeon stuck some gaffer tape on my nuts and asked me to pull them up out of the way. To be honest. I only think he did this to take my mind off him ramming needles up my ass (it didn't work by the way). After the local had done its job, he took 14 samples, which sounded like a staple gun going off every time he stabbed and sliced a bit of my prostate. Top tip: if you're having a biopsy, he can't put enough local in - believe me! I was sore and peeing blood for a couple of days, with blood seeping out on the bed sheets for another 3 weeks. Nice! 

 

The Results

Prostate cancer comes in all different shapes and sizes. Most of the cancers are slow-growing but there are rare types which are aggressive and need prompt attention. My results came through and fortunately, it was the slow-growing type. Surprisingly, I only had cancer on side of the prostate, with the other side being clear. Another bit of good news.

TNM Score

When you're told you have cancer, you're given a TNM score

  • 'T' stands for 'Tumour' and has a score of 1, 2, 3 or 4. It's rare to be diagnosed with Stage 1, as Stage 1 is normally only found by accident during an investigation into something else. The best, realistic score is a '2', meaning the cancer is localised and contained within the prostate gland. Stage 2 is sub-divided into 'a' and 'b', with 'a' being on one half of the prostate and 'b' meaning the cancer covers more than half. Stage 3 means it's broken out of the prostate capsule and Stage 4 means it's spread into other organs - not good! 
  • 'N' stands for 'Lymph Nodes' and is '0' or '1'. '0' means it hasn't spread to the lymph nodes whereas '1' means it has spread. 
  • 'M' stands for 'Metastasis' and is '0' or '1'. '0' means it hasn't spread to other parts of your body whereas '1' means it has spread. 

Given that cancer is really shit news, my score is 'T2aN0M0', which is about as good as it gets - I'm trying to find some positives in this shit storm.

Gleason Score

When you have cancer, it's vital you know the Gleason Score. This measures the aggressiveness of the cancer i.e. is it a cute little Andrex puppy or a snarling hell-dog that's going to rip your throat out. Cancer cells aren't uniform and your biopsy may show different amounts and types of cancer cells, each with different characteristics. Some cancer cells will be slow-growing and relatively benign (Andrex puppy) whereas others will be aggressive and malignant (hell-dog). 

The pathologist grades the two most prevalent types of cancer cells and gives them a score of between 3 and 5, based on how quickly they are likely to grow or how aggressive the cells look. '3' is the slowest-growing and least-aggressive type and '5' is the most aggressive. When it comes to Gleason, the lower score the better. 

Example 1

Main mass of cancer cells = 3

Secondary mass of cancer cells = 4

Gleason Score = 3 + 4 = 7

Example 2

Main mass of cancer cells = 4

Secondary mass of cancer cells = 3

Gleason Score = 4 + 3 = 7

In the above examples, both have a Gleason Score of '7. However, Example 1 is significantly better than Example 2, as the largest mass of cancer cells have the lowest aggressiveness rating. 

The Gleason Score ranges from 6 - 10, with the lowest being 3 + 3 = 6. I scored 3 + 4 = 7, which thankfully, is near the least-aggressive end of the scale. 

 

Treatment Options

Treatment options vary greatly and differ from person to person. Given my individual circumstances, the two most relevant treatment options were:

  1. Radical Prostatectomy 
  2. Low Dose Radiation (LDR) Brachytherapy 

There are other treatment options available but these are the two that were most suitable for me. Obviously, if you get this far down the line, you make the choices that are best for you. 

I did my homework, scoured the internet and read as many research papers as I could get my hands on. To cut a long story short, both surgical options have a similar outcome for someone of my age and risk profile (TNM & Gleason Score). 10 & 15-year mortality rates are roughly the same but the risk of side-effects are significantly lower for LDR Brachytherapy compared to Radical Prostatectomy. 

It's a no-brainer. Given similar outcomes and how I wanted to live my life after surgery, I choose the option with the lowest risk of side-effects. 

 

Treatment Programme

My treatment schedule is in 3 phases, spread across 12-months. It started the day I received my biopsy results (June 2020).

  1. Hormone Treatment (3 months)
  2. Surgery
  3. Hormone Treatment (9 months)

Hormone

Hormone treatment varies but the particular cocktail of drugs I'm taking are Bicalutamide, which stops the prostate from absorbing testosterone. Over time, this kills prostate cancer cells and weakens any remaining, making them more sensitive to radiation. I also take Tamoxifen to counteract some side-effects and Sildenafil (medical Viagra - happy days), which gives a better outcome of retaining full-function post-surgery. 

I'm suffering with some side-effects from these drugs:

  • Feeling spaced-out and light-headed
  • Nauseous and being sick
  • Constant metallic taste in my mouth
  • Constant fatigue

At the time of writing, I've been on hormone therapy for just over 1 month. Fortunately, I haven't started to grow moobs yet (one of the side effects FFS!), so I hope Lady Luck smiles on me and I don't have to suffer this final indignity. If I am unlucky, they disappear once the drugs stop. Paul, I may have to borrow one of your bra's - you know who you are :-)

 

Surgery

Assuming all goes well, my Low Dose Radiation Brachytherapy procedure is scheduled for early-Sep. It involves surgically implanting radioactive material directly into the prostate. This nukes the cancer and minimises collateral damage to the surrounding tissue. It's done under general anaesthetic, a lot less invasive than a Radical Prostatectomy, has quicker recovery times and fewer side effects. 

 

Post-surgery

I continue to take drugs for 9 months after surgery and have my PSA levels checked regularly. Studies have shown that for my risk profile, a PSA level <0.2 four years after surgery means an excellent chance of survival - 99% after 10 years and 98% after 15 years. I've got lots of things going in my favour and I've caught it early, so I'm hoping to be cured and make a full recovery. However, I'll be having my PSA levels checked regularly for the rest of my life.

 

Do Your Research

If you're unlucky enough to be diagnosed with prostate cancer, you're going to be freaked out. I was. However, my advice is try not to panic (easier said than done) and blindly accept the first thing you hear from your doctor. Everyone's different so do your research. Understand what's going on in your body, the different options available, risks and outcomes and only then decide what the right course of action is for you. 

 

Who gets it?

In the UK, about 17% of men develop prostate cancer and it kills about 12,000 each year, that's 32 men every day! However, there are things you can do to reduce your risk factors. Unfortunately. I've done everything right and I've still got it, so it doesn't always hold true. 

  

Survival Rates

If you catch it early, prostate cancer is extremely treatable and potentially curable. Unfortunately, the hard part is catching it early! As a rough guide, the age range of the patients my surgeon sees are:

  • 50's - 20% of patients
  • 60's - 60%
  • 70's - 20%
Sadly, prostate cancer is not limited to us old farts. He saw a chap in his early 40's the week before me, so keep an eye on things and catch it early. 

 

Information is Power

Early-stage prostate cancer is hard to detect and you have to know what clues to look out for. The Prostate Cancer Health Check questionnaire is a good place to start and identify if there's anything to investigate.

Questionnaire

 

Before my diagnosis I had little knowledge of prostate cancer and it's only by complete chance that I managed to catch it early. This blog pulls together various articles and videos I found helpful during my research. If it helps just one person identify prostate cancer and get successfully treated, I'll be an extremely happy man. 

Please feel free to share this to your friends and hopefully it may help save someone's life. 

Safe miles

Mark Clarke 


1 Response

PM David Shalit
PM David Shalit

July 20, 2020

Fair comment. It is a stressful experience and as indicated forget retaining any dignity but for most of us the result is worth it. My psa a week ago was 0.03 which is about as good as you can get and this over 6 years on so if anyone reading this has any doubts, get yourself tested – it pays off!

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