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Dis-Ease: Living with Prostate Cancer

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Monday
Mar182013

Prostate Cancer in a Nutshell

Prostate cancer has a human face, well several faces. At a dinner last week with volunteers for the charity Prostate Cancer UK, men with prostate cancer and women who have lost a husband, father, or brother to the cancer, there was a lot of laughter and some serious talking (I suspect our jokes about prostate cancer and the consequences of treatment might not go down well at a regular dinner party or the church social, but they help us). The man sitting to my right on two occasions had to have his urethra scrapped clean of scar tissue, which can develops after surgery, had severe incontinence and eventually had to have an artificial urethral sphincter put in (a procedure you do not look forward to). Across the table from me was a woman whose husband had died a painful and horrible death, and while the year of dying brought them closer together, she was still raw. The woman to my left wondered if it were her fault her husband couldn’t get an erection; yes, she knew his treatment had damaged the nerves that enabled him to have erections, but still, in the moment of love she couldn’t help but wonder despite herself. The fourth member of our quintet was on hormone treatment to keep his cancer at bay, but he was humiliated by his man-boobs and had taken to wearing loose fitting shirts. It was all fun and pain over wine and chicken, and all of us in that upstairs pub room were alive.

March is prostate cancer awareness month, and believe me when I say we need a little awareness raising. For example, cancer tumours have specific molecular structures and over many years researchers have identified particular molecular structures for various forms of cancers, from breast cancer to leukaemia. Based on their work, specific drugs have been developed to attack directly those molecular structures in cancer tumours. None of this work has even begun in the area of prostate cancer. No sustained research to clearly identify molecular structures and thus no drugs created to attack them.

In the UK, one man dies every hour of prostate cancer. It is the most common cancer among men. There is no reliable test for prostate cancer and no test at all to distinguish between an aggressive killer cancer and a more benign cancer that a man can live with for years. There are often no symptoms until it is too late. When you are deciding what to do there is a lot of guesswork involved. If you guess wrong, you’ll pay. If you guess right, you’ll pay.

Owen Sharp, the CEO Prostate Cancer UK, wrote:

This is where we stand. We have a test that divides medical opinion and isn’t fit for purpose. Treatment options that leave men impotent, incontinent and alone. A gland that can be as vicious as it is silent and awareness levels that should put us all to shame. This, in a nutshell, is prostate cancer in the UK.

Some people say prostate cancer only kills old men. Let’s put aside that this accusation and excuse – for this is what it is, an excuse – is misleading, ill-informed and inaccurate, and think about exactly what these people are saying: it doesn’t matter that men are dying, they’re old. We may live in an ever-changing landscape of advancing technology and scientific endeavour but this thinking drags us straight back into the Stone Age.[1]

Prostate Cancer UK  is taking a more creative and aggressive attitude towards prostate cancer, and given that I have been diagnosed with prostate cancer myself, I’m more than pleased. Read, for example, the statement in the charity’s Manifesto:

Our heritage is founded on a sense of outrage that men with prostate cancer were – and still often are – given a raw deal; insufficient clinical knowledge about the nature of the disease; totally inadequate diagnostics; and treatments which all too frequently result in unnecessary physical and psychological damage. This sense of injustice runs through all that we do and we will work tirelessly to change the status quo.

Outrage. Raw deal. Injustice.

While Prostate Cancer UK is taking off the gloves, the charity does not lack a sense of humour. The Sledgehammer Fund was launched with a TV advert staring Bill Bailey and was followed by other ads to raise both awareness and funds. The prostate gland is as small as a walnut, but as the ad says “it’s a hard nut to crack – and it’s going to take a sledgehammer to do it.”

The purpose of the campaign, as stated on the charity’s website, is:

to reach up to 96% of men and women over 45 across the UK. This urgent information about prostate cancer should reach nearly all the men in the UK who are at a high risk of developing prostate cancer, and their families. The adverts and the accompanying press activity is set to inform many thousands more men about prostate cancer and will raise money to help us:

  • find anwers by funding research
  • support men and provide vital information and lead change
  • raising the profile of the disease and improving care.

So please have a look at the adverts by clicking here! And after you’ve had a look and a browse around the website, send some hard cash.

We’ve got a long way to go, but thanks to Prostate Cancer UK, Movember, increased funding for and interest by medical professionals, we are making progress.

This blog has been about the situation in the United Kingdom, but the last time I looked at the website’s statistics, people from over 30 countries visit The Back Road Café on a regular basis. So, if you are from a country other than the UK, find your prostate cancer charity and see what you can do to help. And if you don’t have one, get together with some other guys and start one. After all, Movember started with three guys sitting in a Melbourne pub.

Copyright © 2013 Dale Rominger


[1] Sharp, Owen. “In a Nutshell.” Progress: Prostate Cancer News and Views. Issue 1, February 2013.

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