Behind the screen
Published in The Weekend Australian, 18 October 2014.
Testing for prostate cancer is controversial, but ignoring the problem is worse.
A bright Queensland spring day in 2011. I sit hunched next to Dad, keeping vigil as he slowly succumbs. I gaze across a wasted body, a scraggy 45kg of flesh and bone – all that is left after years of fighting cancer. His face has a waxy parchment hue. I gently stroke his clawed hand, tense with pain and mapped with purple-blue veins, and imagine death kneeling on his chest, squeezing away life. His breathing rattles; his eyelids flicker.
My mother had written to me years ago telling me that Dad was having problems with his prostate. Why had he ignored that early warning?
Dad has had to seek some medical advice and goes to have an X-ray tomorrow for his stones in his prostate. A couple of weeks ago, he was having pain and I finally persuaded him to see the doctor.
May 27, 1982
The specialist said he was too young to have the prostate operation. That made him very pleased. He’s feeling a lot better now and looking it.
June 15, 1982
Dad’s just been refused some life insurance we wanted to take out. They wanted a 50 per cent loading even though they made him take a medical – it’s his prostate stones which are the problem.
July 18, 1983
Mid 2014. In the early morning gloom the bed cover is quietly turned back. It is frigidly cold and dark. There is a faint rustle as my husband pulls on some warmer clothes and pads softly across the floorboards into the lounge. And there, for the next half an hour, he doggedly goes through his exercise routine. It has been the same every morning for the past 18 months.
Later that day, he comes home from a long, arduous day at work and bangs down his bag on the kitchen bench in frustration. “Why did I have the bloody surgery? What was the point? I wish I’d never gone ahead and had it done!”
My husband had a radical prostatectomy in November 2012, little more than a year after my father died of prostate cancer. He wasn’t expecting the side-effects to be as bad as they were, and in talking to a number of men while writing this article it seems to be a common theme. His frustrations are felt by so many who experience erectile dysfunction and urinary incontinence, among other side-effects, as a result of surgery for prostate cancer. It is important to ask all the right questions before you have surgery in order to manage expectations. Unfortunately, for my husband, his choices were limited.
I try to reassure him. I would rather he were here, with years still to live and enjoy, than watch a repeat of a lingering death. Yes, there have been persistent side-effects: a bit of urinary dribble; difficulties in that other, more intimate, part of our lives. But he is healthy. Even so, these side-effects cut to the core of who he is; they bring into question his manhood.
My husband is a non-smoker; he is not overweight, nor is he a drinker. He could probably do a bit more exercise, and he works long hours in a challenging job. The exercises are to improve his urinary incontinence, which is bad enough to frustrate him – and bad enough to feel embarrassed about getting plain cardboard boxes of incontinence pads delivered to our door. He often questions whether having the surgery was the right decision.
That “other thing”, that intimate part of our lives, we are gradually getting sorted, although it has caused quite a bit of heartache. It will probably never be quite the same as it was, but as a couple we are content.
Yes, we know about prostate cancer in our family. My brother, who lives in the UK, had the same operation in the months before my father died. Some nerves were cut during his surgery, so now it is a case of “thanks for the memories”. Not much fun for a man still only in his mid-50s. He feels the same sense of frustration as my husband. He copes well, and just says that when he goes to the pub for a relaxing beer he needs to take “precautions”, because the beer relaxes other parts too.
Both of them have fared better than my father. He was finally, irrevocably, diagnosed with prostate cancer in early January 2006 and, because it was so advanced, his testes were removed less than a week later. That was a serious shock. It seems, since those first hints back in 1982, he did what a lot of other men have done before – and since. Ignored the problem.
In 2013, 22,000 men joined about 120,000 already living with prostate cancer in Australia. 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 growing.
Rob Tonge volunteers at the pointy end, with men who are dealing with this disease, as an organiser 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 mental health, but he always makes sure there is someone available to support the family if needed.
The meeting I attend starts with rowdy banter and hilarity as Tonge gets into his stride by warming up the crowded room with some well-appreciated jokes. They have 440 members, he says later, and wives and partners are in conspicuous attendance. Some men cope alone, but a network of volunteers is available to accompany them to medical appointments and provide 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 the group’s success lies in the networks it has built with medical professionals and organisations such as Lions and the local Men’s Shed movement. The Community Health Centre in Nambour sends a social worker each month to offer counselling and support; medical specialists are booked to speak regularly; and legal professionals advise about wills and power of attorney. These activities are reflected among the 150 support groups around the country associated with the Prostate Cancer Foundation of Australia. Every year the foundation conducts a community attitude survey and over the past decade or so awareness of prostate cancer has increased: in 2014, two-thirds said they knew a bit or a lot about prostate cancer compared with 51 per cent in 2002.
Back at the meeting, Tonge whisks through a pile of pamphlets and emails from research bodies requesting members to participate in surveys. 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.”
His final announcement before the tea break is about the “Pfizer Riser”, Viagra. Amid cheers and whoops of delight he tells everyone triumphantly that Viagra is off the patent list and generic brands are now available from $14.
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 com- pared 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.
The foundation’s survey found that nearly 40 per cent of respondents were confused about the usefulness of testing for prostate cancer. There is also controversy about the type of screening. Many men think 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 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 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.
The new doctor insisted on doing a physical exam as well. This entails a digital rectal examination to 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.
The risk of contracting prostate cancer by the age of 85 is one in six. Even so, most of these men will not die of prostate cancer, but rather will die with it. Partly because of this, just screening for the disease can be controversial.
Why cause angst about something that may not kill you? Having said that, men who are screened and find a slow-growing, early-stage cancer have the option of monitoring it and proceeding with invasive treatment only when deemed advisable.
The first set of Australian national guidelines for PSA testing are due out before the end of the year, a collaboration between the Prostate Cancer Foundation of Australia, the Urological Society of Australia and New Zealand and other major groups. At the moment, the foundation recommends that men 50-plus (or 40-plus, for those with a family history of prostate cancer) talk to their doctors about using the PSA test and rectal examination as part of their annual health check.
If cancer is detected as a result of the biopsy, surgery is not a forgone conclusion. Doctors can recommend different approaches to treatment: some will suggest surgery or radiotherapy; others may talk about watchful waiting, or active surveillance, depending on age, the general state of health and the aggressiveness of the cancer.
Urological Society vice president Professor Mark Frydenberg says most groups would suggest a man diagnosed with a low-volume, low-risk cancer “should be managed expectantly with close surveillance, and not with immediate treatments that may affect quality of life. Similarly, all screening studies have shown that, unless a man has a 10-year life expectancy, he will not benefit from the early detection and treatment of a prostate cancer due to the slow growth rate of many such cancers.”
But there are no excuses for not getting tested when appropriate, or for ignoring those bothersome signs and symptoms. Three men in my family can attest to that.
On that bright Queensland spring day in 2011, as I sat next to Dad, the mood in the room was sombre. Outside, flamboyant birds quarrelled over the birdbath in the garden. Vivid green foliage wafted in the breeze. Dad convulsed and gasped, grabbing sharply for breath. He strained to sit up, looking beseechingly into Mum’s eyes, panicked, knowing the inevitable. His eyes spoke the words he couldn’t articulate. “I’m done. I love you.” He slumped back. Finally, his pain was over. Momentarily, the birds outside his window fell silent. The breeze quietly died.