Chemical Castration and Prostate Cancer:The way it was

May 7, 2010

The Way it Was
I first heard the words “chemical castration” from my orthopedic surgeon. We were chatting, and he asked after my husband. This was about a year after Dean’s diagnosis (prostate cancer) for which he’d been treated with a combination of Androgen Deprivation Therapy and radioactive seed implantation. ADT is chemical castration. By the time the orthopedist dropped it casually into our conversation, I/we pretty much knew that Dean had, in essence, been castrated. What else is a systematic shut-down of the body’s testosterone?

And yet it shocked me to hear these words.  Why did I have to hear them first from a doctor friend in casual conversation? The urologist who first treated Dean had assured him that eventually his life would come back to normal. He’d been vague about the treatment aftermath, and we should have asked more questions, but we were scared, so we just went along.

By the time my intellect caught up to what my gut already knew, there was no doubt that our lives together had changed. First, there’d been the hot flashes, the lethargy, the passivity of a body learning to live without a hormone that has defined the self. That’s what testosterone does for men, as estrogen, progestin and oxytocin do for women. But we women are prepared all our lives for “the change,” which happens slowly, beginning in peri menopause, and ends a few years later. Men who undergo chemical castration, with the final unkind outcome of erectile dysfunction and low– or no–libido (desire), often know little or nothing about possible consequences going in.

Artificial andropause (my personal definition of ADT) is chemically induced via pills and injections, and effective in only a few months. Because testosterone encourages prostate cancer growth, these treatments are part of the arsenal doctors have assembled to halt PCa or slow it down. Some men receive ADT when their cancer returns; others receive it in late age when radiation or surgery are not viable options. A third less common use, to shrink the prostate in preparation for radioactive seed implantation, was the strategy in Dean’s case; an unwise one, given his age (he was young enough for the best alternative, prostatectomy) and the size of his prostate (90 cc’s, so huge that the ADT actually failed to shrink it sufficiently prior to seed placement). That we didn’t do more research is our regret, one we’ve shared and dealth with via writing and publication (How We Survived Prostate Cancer: What we did and what we should have done, Newmarket Press, 2009).

When we emerged on the other side of treatment, we both had changed, and I was beginning to question whether we had a marriage at all. While ADT went on, not only did we not touch each other, but it seemed that touching of any kind was, for him, repulsive. An insomniac to begin with, he was up all night, those long nights. Between the aftereffects of radiation (burning, surges) and the results of ADT, he was a mess. He wanted to sleep alone, and so my mattress in the attic became my full-fledged apartment. That’s when I began to wonder what the difference between roommates and marriage partners really is. I cried myself to sleep most of those nights.

Many marriages break apart at this juncture; there is research to support the idea that partners of men treated for PCa are often more depressed after treatment than the men themselves. Our marriage didn’t break up. I kept a journal which became the book, a way of talking to the world and to my husband. Dean’s voice entered the narrative and it became ours, part of the new normal we’ve been searching for ever since cancer upended things.

In those long-ago days (8 years ago) hardly anybody was talking about aftereffects of treatment. Support groups and websites existed, but the general narrative was, “Be thankful cancer has been beaten.” Quality of life was on the back burner, because the whole idea of surviving cancer was so new. The effects of treatment, especially hormone blockade, went undiscussed in many doctors’ offices. That’s why “chemical castration” was new to me as a concept a year after my husband had undergone it.

Another reason for this silence is official ambivalence. It must be difficult for urologists to know how profoundly the lives of patient and partner will change, especially if these urologists happen to be men, as most are. Since elemental ideas of manhood–on the street, at the office, wherever–are bound up  in the eyes of society with sexuality and sexual performance (we all know that “potent” has many meanings) the men who receive ADT and the doctors who administer it have, until recently, resorted to a complicit “Don’t ask, don’t tell.”
Those days are gone, I’m pleased to say, and tomorrow I’ll say why I think that’s true.  Stay tuned.
(read The Way it Is tomorrow).


Medical Fashion

March 12, 2010

Medicine has its own fashions, and while they rule, they rule.  The healthcare fashion runway (medical journals or labs, clinics, newspapers, websites), features models of its own (the people whose lives have been saved or improved in a noticeable way by one or another treatment or device).  But ways of thinking, like fashions, turn, sometimes on what seems like a research whim, and this year’s wonder device, supplement or brilliant treatment strategy may end up suddenly in the has-bin. 

That’s how it shook down a year or two ago for Hormone Replacement Therapy, last decade’s fountain of youth for menopausal women, now widely considered risky business.  Vioxx went that direction. Antioxidents and Vitamin C. have lost their pizazz, as has glucosamine for arthritis.  Even the unassailable mammogram, once important at forty is considered questionably useful at fifty or beyond.   

Add to the list “P.S.A.,”an acronym that once stood for “Public Service Announcement,” until it became a synonym for worry in men of a certain age whose prostates might possibly harbor cancer. Prostate Specific Antigen, a normal protein in men’s blood that, when elevated, can signal prostate cancer, might also indicate Benign Prostatic Hyperplasia–or nothing. The often painful prostate biopsy that usually follows an elevated PSA, even when it yields positive results, won’t tell you or your doctor whether the prostate cancer in question is one of the fast-moving variety or the other far more common one you’ll die “with, not of.”  

 Mammograms, PSA–these tests cost us all a lot of money, and money is something we ought to be saving, isn’t it? ( starting with overinflated executives’ salaries might be more prudent). But what has really happened is that the optimism surrounding the tests’ universal use has begun to fade. Suddenly it isn’t clear if or why most of us should get them, and statistics aren’t making a case for continuance.

 Well here are two cases:  my sister, whose breast lump was removed at 71, and my husband, whose rapidly escalating PSA might have indicated virulent cancer (we’ll never know).  Almost everybody knows someone who might have died if he or she hadn’t been tested.  But these days,  a kind of “ignorance is bliss” approach surrounds both these cancers; it’s almost  “don’t ask, don’t tell.” 

What’s changed?  Our optimism concerning survival and treatability?  Out with the old  and in with the new:  float another dress down the runway.


the dark undiscussed corner of male sexuality

March 4, 2010

Why is libido the dark undiscussed corner of male sexuality?  If you read Dana Jennings’ blog on the The New York Times website, he talks about libido as distinct from erectile function, but not many other men who are prostate cancer survivors do. And yet, women who suffer from sexual dysfunction talk mainly about their libidos. It would seem that for men sexuality is forever linked to the mechanics of the penis, so much so that libido is cast aside and forgotten.

There is a great difference between the desire to have traditional sex and the ability. Of the two, the greater and subtler challenge is desire: without it, even a man who has solved the problem of mechanics via pills, a prosthesis or a vacuum device is likely to have a hollow or ironic experience.

Out of the corner of his eye, my husband saw me in a revealing blouse, and it did something. But the lovely moment vanished, and we haven’t been able to get anything like it back for months. Dana Jennings describes similar moments. That’s how it is. There are a lot of guys out there with zero motivation on account of hormone ablation, which keeps the body from producing testosterone. In some men the loss of libido post hormone treatments is permanent; in others temporary. Nobody knows why.  Only recently have some  doctors begun to discuss these effects frankly with their patients before treatment. Each of us—both Pca men and the partners who live with them—has a different thing to struggle against…what an intricate process cancer survival can be.