Prostate Story: Part 1

If you google “How many men suffer from prostate cancer?” (which turns out to be a common query), the answers you’ll get include:

“All men are at risk for developing prostate cancer. About 1 man in 9 will be diagnosed with prostate cancer during his lifetime, but only 1 man in 39 will die of this disease. About 80 percent of men who reach age 80 have prostate cancer cells in their prostate.”

Does it run in families?

“Prostate cancer seems to run in some families, which suggests that in some cases there may be an inherited or genetic factor. (Still, most prostate cancers occur in men without a family history of it.) Having a father or brother with prostate cancer more than doubles a man’s risk of developing this disease.”

If you get prostate cancer, are you going to die? (Well, yes… the mortality rate for life is 100%… But the answer the WWW actually gives is:)

“The 5-year survival rate for most men with local or regional prostate cancer is nearly 100%. Ninety-eight percent (98%) are alive after 10 years. For men diagnosed with prostate cancer that has spread to other parts of the body, the 5-year survival rate is 30%.

I’m sceptical about the figure of 1 in 9 men getting this diagnosis (or 1 in 7 according to another source). Most of the older men I’ve spoken to about my recent experiences say, “Oh yeah… been there… done that…” (I’ve yet to see a T-shirt…) “You’ll be OK.” So the message seems rather: It’s very likely; it’s very survivable. And, as some of those friends almost evangelistically continue, when talking to other men: “If you’re over 50 or 60: get your PSA tested.”

My own ‘prostate pathway’ began after we moved to Thame. I’d been noticing one or two of the symptoms that are well-known indicators, and mentioned them to my GP when I went for our first meeting. She proposed an internal examination as the first step. Well, they say you should embrace new experiences as you get older…

(She: “You can have a male doctor do this, if you prefer?” Me: “If someone’s going to be sticking their finger up my bum, I’d rather it was a pretty young woman.” — No, I didn’t actually say this; and since she was an intern I got her male supervisor looking on anyway.)

The result was, my prostate gland did feel enlarged on one side, so the next step was for one of the practice nurses to take a blood sample and send it for PSA (Prostate Specific Antogen) testing. My level came back as slightly elevated so I was sent an appointment for an MRI scan. In all sorts of ways, this had been one of my nightmares. I’d only ever seen it on TV, where the patient disappears into a noisy, narrow tube, and so often suffers some disastrous reaction. For someone who is slightly phobic about medical dramas, and very phobic about being shut in confined spaces, this represented a challenge. But the reality was that strangely comforting – almost womb-like, you might say.

The literature tells you that, after the MRI scan, you may be called back for a biopsy. I got the distinct impression that around here this is not a ‘may be’ but a ‘will be’. Another new, and much more unpleasant, experience. The TRUS (Trans-rectal ultrasound) biopsy involves having a probe inserted in your back passage, with needles which stab you in the prostate 12 times, taking small tissue samples for analysis. The kindly women who inflicted this on me, in a kind of “Hail fellow, well met” manner, promised me that it would be possible for me to get a printout of the ultrasound picture of my prostate, which I could have shown off to my nearest and dearest in the manner of newly pregnant mums with their antenatal pictures; but alas, they forgot to do this. Their offer to reinsert the probe and have another go, I politely declined.

The biopsy showed that there were indeed cancerous cells present in my prostate, and you get this information in the arcane formula of a Gleason score, which is a mixture of the most common grade of cancer present, and the highest other grade in the samples. It’s a bit like being read a page from Wisden, so if you like that kind of thing, I’ll leave you to read all about the scores on one of the link pages. I was in the ‘low risk’ category, however; so the proposed action was: No treatment, but active surveillance. Sounded good to me.

Trouble was, after a year of quarterly blood tests, my PSA level didn’t do what I hoped it would: hover about around the same level. It continued to go up, indicating that whatever cancer was present, was growing. At this point you embark on the next step of the pathway: a second MRI scan, and a second biopsy: this time a trans-perineal biopsy which allows for more samples to be taken, and greater accuracy in selecting where they are taken from. I hoped that trans-perineal biopsy would be less unpleasant than the TRUS. It wasn’t, really. And, it was done by the male surgeon, rather than the hearty women.

It also revealed that I had transitioned from low to medium risk — only just — so it could be desirable to do something about it. The NHS is a lot about choice, these days — which is all a good thing! But it does involve a lot of the professionals’ time, explaining stuff to people who don’t know much about it and may well not want to know anyway. The main thing anyone needs to know is, that around here, they are brilliant at it. In the case of a man of my age and general health, there were two courses of action which are thought to be equally effective and successful: radical prostatectomy surgery, and radiotherapy. You get to meet the consultants in both areas in an event that is reminiscent of a fresher’s fair, with different interests setting out their stalls and trying to get you to sign up. The advantages, the disadvantages, the possible outcomes and side-effects, and so on.

The surgery option begins encouragingly with, “Well, we have to tell you that in rare instances, surgery can result in death…” After that, it does get better. For various reasons, we decided to opt for the radical surgery. One, if the cancer does return, you can have radiotherapy after surgery, while surgery after radiotherapy is often not possible, because of tissue scarring that can be caused by the earlier radiation. Two, it seemed at the time that surgery would be less intrusive on our lives, than having to travel to the hospital for daily radiation treatments. But what really clinched it for me was that the radical prostatectomy available around here is robot-assisted! keyhole surgery! It almost makes you want to become a surgeon, so that your work is like a computer game, shooting down prostate glands like space aliens. (This may not quite do justice to the procedure, though the short video clip we sat through that showed the procedure was pretty exciting.) I couldn’t find the exact video we saw online, but this (presumably, promotional) video gives an idea of it.

Having opted for surgery, we were told the waiting list was 10-12 weeks. As the weeks went by, we began to wonder whether this was a figure based more on aspiration than on the reality of staffing levels in the operating theatres. We prayed the surgery would take place before Christmas — and here’s why you should always be careful what you pray for — a letter arrived ‘confirming’ the date of my surgery as December 24.

(To be continued…)

There are lots of online resources about prostate cancer, among which the most extensive and helpful I’ve found is Prostate Cancer UK. The NHS site has lots of excellent helpful information. A starting point might be to watch this video. And there is, in fact, even a T-shirt:

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