Living with prostate cancer

Tony and Roz Baker share their story of how an impulsive decision to have a check-up led to a scary cancer diagnosis. Today, they say, the illness has made an extraordinarily positive impact on their lives and the lives of others.

It was 1996 and despite having a successful business in their home of Zimbabwe, Tony and Roz Baker were visiting Australia with a view to possible immigration.

Ambling around Perth's Hay Street Mall one morning, Roz pointed out a Rotary sign offering free prostate health checks. The prostate is a walnut-shaped gland that produces seminal fluid, which nourishes and transports sperm. On impulse Tony, a fit 57-year-old who had always enjoyed good health, went in for a check-up. This proved to be a life-changing decision.

Tony was diagnosed with a fast-growing form of prostate cancer known as Gleason 8. Like most people diagnosed with cancer, the raw fear of death was the initial challenge.

"It sent me into total shock," he recalls. "The news changed everything. Leaving friends and family behind suddenly became a secondary hurdle of our pending move to Australia. We felt very fortunate that we'd be living in a lovely country with up-to-date medical facilities."

Soon after Tony saw Professor Keith Kaye, a senior urological surgeon from the department of medicine at University of WA, who told him that had he been diagnosed a year or two earlier, surgery would almost certainly have solved the problem.

"I had no idea"

In its early stages, prostate cancer often doesn't produce any obvious symptoms. Indeed, prior to his diagnosis, Tony had no indication that anything was wrong. Thinking back, he remembers having slightly more night visits to the toilet, but this hadn't concerned him. (See table below for signs to look out for, including sudden urges to urinate and pain during urination.)

The tests used to diagnose prostate cancer are digital rectal examination (uncomfortable but potentially life-saving), a blood test to check for prostate specific antigen (PSA) and transrectal ultrasound.

Medical practitioners unanimously agree men need to have a prostate health check every year or two from the age of 50 years. If there's a family history of prostate cancer, this needs to happen annually from the age of 40 years.

What can be done?

Once detected, there is a range of different treatments available, depending on the patient, their age and the stage of their cancer. Professor Kaye discussed various options with Tony and Roz, including hormone-blocking treatment, radioactive seed implants, radiotherapy and prostate removal surgery.

As Tony faced this surgery back in April 1997, his thoughts were preoccupied with how it would impact the quality of his life. "Roz and I discussed issues like impotence and incontinence with Keith," he explains. "The professor boasted that he'd only ever had one patient who'd had a problem with lasting incontinence. He couldn't make the same guarantee on the matter of impotence, however. He told us the results vary from case to case."

Tony opted for surgery. The six-hour operation took place on 30 June 1997. "They pretty much took all my insides out, including the intestines, dropped them on the table, removed the prostate, then put them all back in again!" Tony recalls.

Happy to be alive

Tony's relatively late diagnosis meant keyhole surgery, with its much faster recovery process and quicker return to normal sex drive and erectile functions, was not an option. Roz recalls the first days after her husband's prostatectomy. "Tony was just happy to be alive! Then, for the next two weeks he had a catheter (a thin tube) up his penis. This assisted the urethra to heal, allowing urine to drain from the bladder into a bag strapped to his leg. However, until his bowels started working again he couldn't eat anything. The nurses would ask him three or four times a day whether he'd 'passed wind' yet."

Tony's sense of humour helped him cope with the challenge of incontinence. Together with Professor Kaye's knife talents and the five-times-a-day pelvic floor exercises, the need for incontinence pads lasted for only a few weeks. However, some men aren't as lucky.

Positive outlook

Tony maintained his typically optimistic attitude after the surgery. "Around that time, US Gulf War Commander 'Stormin' Norman' Schwarzkopf had also been diagnosed with prostate cancer," he says. "I read how straight after his operation he had walked around the garden on his son's arm. I thought, 'If he can do that, I bloody well can, too!'" That day Tony walked a kilometre to the nearest shop for a newspaper, and home again.

But he had another challenge to face. Usually after surgery, prostate specific antigen levels in the blood drop to around zero, but Tony's began going up again. This showed the cancer was spreading. So Tony started taking hormone blockers to reduce the testosterone in his system that was stimulating cancer growth.

"I knew this meant our lives would never be the same," recalls Roz. "The research I'd done while Tony was in hospital helped prepare me for the side effects that came with each period of treatment – the extra weight, his lethargy, the marked reduction in sex drive and, of course, the impotency."

In the early stages, Tony struggled with facing something he had no control over. His moods spanned from aggression to extreme vulnerability, and were peppered with feelings of inadequacy, fear, insecurity and disappointment.

For too many people, impotence is a taboo subject. It's common for men in Tony's situation to turn away from their partner, become introverted and closed. For Tony and Roz, their ongoing open and honest communication was a major factor in seeing them through.

"Just because you're impotent doesn't mean your partner doesn't still have needs!" Tony reminds us. "Fortunately Roz and I have always had a fantastic relationship and so it wasn't the end of the world, but we had to get creative and inventive. We've always had a tactile relationship, which definitely helped, plus we visited the local sex shops where we got great advice from surprisingly knowledgeable and understanding staff."

Men become totally impotent only if they do not try to have erections or keep the blood flowing in the genital area after surgery. It takes perseverance but damaged nerves can slowly repair. Plus, a man who cannot have an erection can still have an orgasm and even during treatment both partners can still have enjoyable sex. While many men just give up, Tony took the opportunity to make the most of the situation.

Mind matters

"Although my prognosis wasn't good, I was determined to live as long and fully as possible," says Tony. "I kept looking ahead and made sure I always had a long-term project to work on."

Roz is convinced this is what prevented Tony from the same plight of depression that many in his shoes suffer.

"I also happen to have a very, very good wife who has been incredibly supportive," Tony adds. "I couldn't have done it without her."

Tony also took up meditation – for 15 minutes three times a day he meditated, focusing on the prostate area. Plus he consulted Chinese and Western herbalists for supportive treatment and took vitamin and mineral supplements to combat anaemia and osteoporosis, which were side effects of the hormone-blocking treatment.

Diet and exercise

The prevalence of prostate problems is far higher in Western countries, probably in relation to our refined diet and high-stress, low-activity lifestyles.

Men managing prostate cancer need to reduce their saturated fat intake, eat Brazil nuts daily for the selenium content and avoid eating processed meats, says dietitian Lisa Yates. "Fruit and vegetables with high vitamin C and lycopene content are also helpful. And eat your fruit and veg with the peels on whenever you can," she adds.

Robert Newton, foundation professor of Exercise and Sports Science at Perth's Edith Cowan University, emphasises the importance of exercise in daily life, as well as both before and after prostate cancer surgery.

A program from a qualified exercise physiologist can help reduce body fat, increase muscle mass and strengthen the capacity of the heart, all of which will support a person's tolerance of surgery and encourage a swifter and better recovery. Tony now enjoys cycling 20 kilometres three times a week.

Life goes on

"Men are notoriously reluctant to get themselves checked out," says Roz. "We're just both so grateful Tony did that day, otherwise he probably wouldn't be here now, let alone be feeling so well and happy."

Roz now represents Rotary on the Western Australian Board of the Prostate Cancer Foundation of Australia. "We actively share our knowledge and experience with people who are going through the same thing, but there's a huge public awareness job still to do.

"Working through this together has brought us so much closer – it's been a sort of bizarre and unexpected continual adventure."

"Not finding out soon enough to stop the cancer spreading beyond the prostate means I still have it today," says Tony. "But, amazingly, our lives are fuller now than ever before. The past 10 years have somehow been the best of my life. This whole experience has taught me to treasure every day."

For more information, visit:

www.prostate.org.au
www.cancerinstitute.org.au
www.continence.org.au
www.yananow.net
www.impotenceaustralia.com.au