Battling misconceptions about prostate cancer

There can be a genuine embarrassment for some when body parts become unreliable. Picture: PA

Talking about prostate cancer can only help in battle to beat it, says Mike Shaw

Men are notoriously bad about dealing with their own health. While women will talk openly about personal issues, men will most often prefer to change the subject, especially if it concerns their waterworks.

Their reasons for this vary. They may be just too busy, working too hard to find time to take action on symptoms, perhaps not even recognising those symptoms.

There can be the genuine embarrassment when body parts become unreliable, something men tend to adjust to with stoicism, not wanting “to make a fuss”, and certainly not wanting to bother the health services.

These are typical experiences reported at the Edinburgh and Lothian Prostate Cancer Support Group (ELPCSG), an independent charity run on an entirely voluntary basis by members. Its aim is to provide support to patients and their families and carers by holding regular meetings in Edinburgh and West Lothian.

A further key aim is to enhance public awareness of a disease that, while rarely occurring in men under 40, increases in incidence in men aged 45 to 64 to a point where it is now the most common cancer in men.

The latest Scottish figures (2012) reveal approaching 3,000 new cases diagnosed, with the current estimate that one out of every 11 men in Scotland is likely to develop prostate cancer, with a higher risk if there is close family history.

Given the scale of the numbers and ages involved, it’s hard to take the fact that a certain negative public perception of the disease remains of it being a problem of “auld men”. Challenging, too, is that ageism appears alive and well in surprising quarters. Perhaps based in part on their own “resource-territory” considerations, some health professionals not involved in cancer care have publicly expressed Orwellian doubts about the “limited value” of new treatments for older men. Perhaps that attitude helps explain why the disease had fallen below the radar for so long.

By contrast, superb women’s groups have been tremendously successful in fighting the cause of breast cancer treatment. Again, in so many instances, it has only been the active intervention of women that has persuaded males in the family to visit the local surgery.

Men are now becoming much more confident about creating awareness of “male” health issues, and the climate of public opinion is changing.

This has been helped in no small part by greater media coverage, with The Scotsman ahead of the field in this area. A case in point was the newspaper’s insightful coverage of the story about Abiraterone, a cancer drug credited with extending the life of al-Megrahi, the Lockerbie bomber, and developed with research support from Scotland.

It was originally turned down for use by NHS patients by the Scottish Medicines Consortium (SMC). This decision was eventually overturned on second submission by the pharmaceutical company. But the same issue is again current, with a further submission to the SMC pending on the use of this life-extending drug prior to, not simply after, chemotherapy.

What is particularly encouraging in all of this, though, is the interest being taken by health secretary Shona Robison. She is urging the SMC and the manufacturer to resolve the issue as soon as possible.

What all of this means from the ELPCSG’s point of view is that we no longer feel quite the same “hidden” patients group. We have also been invited to Holyrood on 28 April to discuss “The Future of Prostate Cancer – Clinical Developments and New Ways of Supporting Patients”.

So there is much to be positive about. New treatments range from drug-based therapies to “robot” surgery technology – not forgetting practical advice on “Active Surveillance” to avoid unnecessary treatments with possible side effects.

The ELPCSG will continue to make its contribution at meetings in Edinburgh and West Lothian, sharing patient experience, inviting expert speakers and providing “buddy” support for newly diagnosed patients.

• Mike Shaw is a member of the Edinburgh & Lothian Prostate Cancer Support Group www.elprostatecancersupport.co.uk For further information, e-mail [email protected] or phone [phone].