Prostate cancer no longer secret men's business

In 2013, according to the Prostate Cancer Foundation of Australia Big Aussie Barbie website, 22,000 men join the ranks of some 120,000 who are living with prostate cancer. As our life expectancy has risen, more men are living with prostate cancer now than ever before. But every year 3300 will still die from prostate cancer. These numbers are huge, and each year they are growing.

Specifically, in Australia in 2012, there were 14,560 cases of breast cancer in women (120 cases in men), compared to 18,560 cases of prostate cancer in men. In 2010, there were 2840 deaths from breast cancer, but 3235 deaths from prostate cancer. When it comes to research funding, in Australia between the years 2000 and 2013, nearly $207 million was spent on breast cancer research, while prostate cancer lags behind with nearly $115 million.

Rob Tonge volunteers at the pointy end, with those men who are dealing with this disease, as one of the key organisers of the Sunshine Coast Prostate Cancer Support Group. Each month he sees new members come in; each month it is likely someone will die. He tells me that, on medical advice, he has had to stop going to all the funerals because it was affecting his own health, but he always makes sure that there is someone available to support the family if needed.

The meeting I attend starts with rowdy banter and much hilarity as Tonge gets into his stride by addressing the crowded room with some well-appreciated jokes. "We have 440 members in total," says Tonge. Wives and partners are in conspicuous attendance. Even so, some men are coping alone. He tells me, "There is a network of 10 volunteers to go to medical appointments with men who are on their own." That way there is a second pair of ears to hear the diagnosis and proposed treatment plan. "Afterwards, the volunteer can discuss it with the patient and make sure he has understood exactly what is happening and the implications of any treatment."

Tonge believes that the success of his group lies in the networks it has built with medical professionals and other groups, such as Lions and the local Men's Shed movement, by being open, communicative and reliable. The Community Health Centre in Nambour, for example, sends a social worker to the meeting each month to offer counselling and support. Medical specialists are booked to speak at meetings all year and legal professionals advise members about their wills, and power of attorney. These activities are reflected among the 150 affiliated support groups associated with the Prostate Cancer Foundation of Australia (PCFA) around the country. There are also rural education roadshows visiting remote and under-serviced regions.

Every year the Foundation conducts a community attitude survey. The latest shows "awareness and knowledge" of prostate cancer has steadily increased over the past decade, with a 12 per cent increase in the percentage of men who feel informed about the disease. More than half (55 per cent) of participants felt they knew a lot or a reasonable amount about prostate cancer testing.

Back at the meeting, Tonge whisks through a pile of pamphlets and emails from a variety research initiatives requesting help from members to participate in surveys. He emphasises that he encourages men to help whenever they can, although he adds, "most of these surveys are done online. Researchers don't seem to realise that not everyone, particularly in this demographic, has a computer or access to one."

I ask if the members get survey "fatigue". "Well, yes, actually, we do, but hopefully it will make a difference, if not for us …" he tails off and shrugs. Unfortunately, we have also been approached by some shonks at these meetings, too. They come here offering cures and claiming fantastic success stories. We soon get rid of them, though."

His final announcement before the break for morning tea is about the "Pfizer Riser", Viagra. Apparently, he tells everyone triumphantly, Viagra is off the patent list and generic brands are now available from $14. There are cheers and whoops of delight from the audience.

Symptoms of prostate cancer can include problems with passing urine, or frequent urination. It may be painful, there may be blood in the urine and the stream may be a trickle compared with the torrent it once was. If the disease has advanced and maybe spread to the bones, there will be pain, unexpected weight loss and probably fatigue, as well.

The Foundation's survey found nearly 40 per cent of respondents were confused about the usefulness of testing for prostate cancer. There is also some controversy about the type of prostate cancer screening. Many men think that all they need is a simple blood test to detect raised levels of the hormone prostate specific antigen (PSA). In the past, a PSA level of 4.00 ng/mL or lower was considered normal; however, recent studies have shown that does not always apply. For example, my father had a hugely elevated PSA result (1760 ng/mL), and clearly had advanced prostate cancer at the time of his screening, whereas my husband's was completely normal for his age (3.4 ng/mL).

My husband had been having, and relying on, regular PSA tests; but we moved house and changed doctors, fortuitously as it turned out. His new doctor insisted on doing a physical exam as well. This entails a digital rectal examination to actually feel the prostate through the wall of the rectum, checking for enlargement and surface irregularities. It was this exam that raised the alarm bells, resulting in a referral for a biopsy to detect any disease and to determine its aggressiveness.