When Richard Wassersug gives a lecture, he likes to begin with a provocative question: Who in our modern society is castrated?
The answer invariably comes back loud and clear: sex offenders. Someone may venture another guess: transsexuals? Or maybe men with testicular cancer?
Wrong, wrong and wrong.
In reality, castration is almost exclusively the lot of men with advanced prostate cancer.
An estimated 500,000 men in North America have been surgically or chemically castrated, the latter with a treatment known as androgen deprivation therapy, and their ranks are swelling by 40,000 a year. Yet the practice and the devastating side effects that can result are virtually never discussed publicly, and most patients suffer alone in silence.
"Right now, it's such a humiliation to be androgen-deprived that patients barely even talk to other patients," said Dr. Wassersug, a professor of anatomy at Dalhousie University in Halifax, and a prostate cancer survivor. "To admit that you've been castrated is shameful."
But Dr. Wassersug and a growing number of activists have no such shame. They are aiming not only to break the silence but to end the emasculation - sexual, social and medical - that castration can bring about.
Dr. Wassersug was diagnosed with prostate cancer in 1998, at age 52. He underwent surgical removal of his prostate - a walnut-sized gland located between the bladder and the rectum - as well as radiation.
The treatments failed to eliminate all the cancerous cells, so he was prescribed androgen-deprivation therapy.
Prostate cancer is a hormonally fuelled cancer. Cancerous cells feed on testosterone - the principal male sex hormone - and the way to snuff out their spread is cut off the fuel supply.
Most testosterone (also known as an androgen) is produced in the testicles. So men are left with an agonizing choice: Accept castration - surgical or chemical - or risk cancer running rampant in the body. "There are hundreds of thousands of men who are faced with this difficult decision," said Andrew Loblaw, a radiation oncologist at Sunnybrook Regional Cancer Centre in Toronto.
Worse yet, the decision is not nearly as clear cut as it seems, because of the potentially devastating side effects and the fact that while ADT may prolong lives, it doesn't save them.
While stopping the production of testosterone slows cancer growth, researchers don't know exactly who benefits most from ADT, when it is best to begin treatment and, more important, whether castration improves quality of life in the long run.
"We really don't have good answers for those questions," Dr. Loblaw said. He is currently recruiting prostate cancer patients for a study that should provide answers, but it will take at least a decade.
In the meantime, Dr. Loblaw said, it is important for patients to discuss the issue more openly and make decisions based on the best available evidence. "In my experience," he said, "people want to choose their poison."
Most treated successfully
This year in Canada, 223,000 men will be diagnosed with prostate cancer, according to the Canadian Cancer Society. Most of them will be treated successfully and eventually die of another cause. But 4,300 men will die of prostate cancer. All of them, and many others, will have been offered castration as a means of prolonging their lives.
ADT aims to shut down production either through orchiectomy (surgical removal of the testicles) or using drugs called luteinizing hormone releasing hormone (LHRH) agonists.
In 1941, Charles Huggins, a Canadian-born researcher, showed that removing the testicles dramatically improved the fate of men with prostate cancer, a discovery that earned him a Nobel Prize. Then, in the early 1980s, French scientist Ferdinand Labrie showed the same effects could be achieved with drugs, and LHRH agonists have been the standard treatment since.
In most cases, the treatment can go on for years, even decades. But, increasingly, men are also prescribed ADT temporarily, for the months before they receive radiation.
"The side effects are astonishing," Dr. Wassersug said. "My symptoms were the same as a woman at menopause except they came on in days, not years."
Hot flashes were the worst. Night sweats soaked the bed. Impotence. Loss of libido. Cognitive problems meant that he could lose his car in a parking lot. A roller coaster of emotions: "I would cry during TV commercials," he said - especially those sponsored by Mothers Against Drunk Driving.
There were physical changes, too: loss of all body hair (except the groin and the face - that only occurs if someone is castrated before puberty); loss of muscle mass; shrinking gonads; gynecomastia (breast development) and accumulation of body fat. Research is showing increasingly that ADT increases the risk of cardiovascular disease (and sudden heart attack in particular), as well as diabetes and osteoporosis.
Dr. Wassersug believes ADT is prescribed in a cavalier fashion and patients are not adequately informed of the side effects.
He said ADT is often presented as a treatment of last resort - "a choice between impotence or life and that sounds like a fair trade-off. But is it really? The tradeoff is really dying of prostate cancer versus dying of a broken hip or a heart attack. And I'm not even mentioning the 16 other unpleasant side effects."
Dean Ruether, a medical oncologist at Tom Baker Cancer Centre in Calgary, said informed consent is a real issue in prescribing ADT. "It's not unusual for a man to not fully understand the implications of the treatment, but we try," he said.
The problem is not unique to prostate cancer, but talk of side effects often seems abstract to patients. This is doubly true of ADT, Dr. Ruether said, because there is so little public discussion of the treatment, and its pros and cons. "Men are starting to come in better educated, but they have a long way to go compared to women with breast cancer," he said.
Bob Shiell, president of the Canadian Prostate Cancer Network, said men would definitely benefit from being better informed. But oncologists and urologists - the physicians who generally diagnose prostate cancer - have to realize, too, that "newly diagnosed patients are in such a state of shock that they will go with just about any recommendation," he said. "They don't take the time to investigate their options or the impact on the quality of life with each option."
Mr. Shiell said that, unfortunately, men view their prostate in the same manner as their appendix: "I'll have it out and I'll be fine."
In fact, while prostate cancer is often portrayed as little more than an annoyance, it can be life altering. Common side effects of surgery and radiation treatment include impotence (the inability to maintain an erection), incontinence (loss of control over the release of urine) and infertility (the inability to produce viable sperm).
If primary treatment fails - as it does in one in five cases - the next step is androgen-deprivation therapy, and castration.
Man couldn't urinate
Fred McHenry, a civil engineer at the time, was on a plane from Singapore to Vancouver when he realized he was unable to urinate. His doctor immediately suspected a prostate problem. "Until then, I had no idea what the prostate was," he said.
Mr. McHenry soon found out more than he ever cared to know. A urologist "did a Roto-Rooter job on my prostate" - a biopsy - but there was no sign of cancer, he said.
Three years later, in 1997, Mr. McHenry returned to the doctor. He did have prostate cancer, an aggressive form. He underwent surgery and radiation, but his PSA (prostate specific antigen - a protein in the blood that can be an indication of cancer) continued to rise precipitously.
He was offered ADT but opted for surgical castration. "Some people cringe at the idea of removing the testicles, but I wanted the best and quickest solution so I bit the bullet," said Mr. McHenry, now 75.
Loss of sexual function was not an issue, he said, because the initial surgery had left him impotent.
But impotence and its ripple effects, from loss of intimacy to depression, are major issues for many men. According to one study, fully half of men on ADT end up divorced in short order. (Mr. McHenry remains happily married.)
John Robinson, a psychologist at the Tom Baker Cancer Centre, said the psychological and sexual implications of advanced prostate cancer treatment are huge and underappreciated. Cancer is not a disease of an individual, it's a family illness; prostate cancer, in particular, is a couple's illness because it casts such a dark shadow over the marital bed.
Dr. Robinson said a lot of couples simply give up on sex because the man can no longer get or sustain an erection. There are aides available like Viagra and penile implants, but what is really required is a change in attitude, he said.
"The message I try to deliver is that you can have satisfying, gratifying sex without an erect penis," he said.
The psychologist - who now treats prostate cancer patients almost full-time - said men are finally starting to speak openly about ADT, and that will make his job of education easier. But he cautioned that openness is a double-edged sword, particularly when dealing with emotionally loaded terms like castration.
"The words are powerful and can be hurtful," Dr. Robinson said. "If a man feels impotent, castrated, emasculated, he's not going to feel good about himself."
The decision on whether to undergo ADT can be a Catch-22. Yes, the side effects are horrible; they can even be fatal. But a death from prostate cancer is excruciating: Cancer migrates into the bone, causing pain that is intense and untreatable.
Despite all he has been through, Mr. McHenry said, that remains the more ignominious fate, and his greatest worry. "Men shouldn't fear ADT," he said. "They should fear the alternative."
But for Dr. Wassersug, the prostate cancer patient in Halifax, the debilitating side effects led him to opt for another form of ADT - estrogen, a female sex hormone that can also suppress testosterone production in men. When ADT was first developed back in the 1940s, estrogen was the drug of choice, but it was discontinued because it greatly increased the risk of stroke and heart attack.
However, Dr. Wassersug said that, based on his research, the manner in which the drug is taken matters. Rather than take estrogen in pill form, he uses a patch or gel - products that are popular with menopausal women.
He has fewer side effects than most men on ADT - fewer hot flashes, less damage to the bones and, most important, fewer cognitive problems that he found horrible when on standard LHRH agonists (drugs that cause chemical castration). The downside is pronounced gynecomastia, or breast enlargement.
"Given a choice between breasts and a brain," Dr. Wassersug said, "I go for the brain."