A Woman Joining Man to Man–Alone

March 17, 2010

As far as I can tell, I’m a pioneer: the first woman in my chapter of Man to Man (prostate cancer support group) to join by herself. It took me a lot longer than it should have, considering the fact that my husband had been diagnosed and treated for prostate cancer almost three years before I stood up in front of a group of almost all guys and told our story.

In those days, Dean was still resistant to the idea of a monthly meeting. Prostate cancer was behind him and he wanted it to stay well to the rear. But we had changed, and it was cancer that had done that to us, generating questions like, “How do we reinvent intimacy?” “Who am I now?” “Why [in my case] am I so lonely?” Pragmatic questions about new forms of treatment, and what to do if cancer were somehow to return I hoped, would be discussed in depth, with updates on the various treatment options into the bargain.

There were that night, and are to this day, other women, but none of them had come alone. The ones who come do so to support their husbands, thanks to the presence of a nurse and trained group facilitator (a breast cancer survivor herself)–the wife of the group’s consultant urologist. Eventually I pursuaded Dean to start coming–“You’ve got to be my date!” And so, he’s been there next to me on the second monday of every month except July and August for three years now. If it were up to him, he’d stay home, but he knows that cancer changed both of us and our marriage (if you want to know more about this, read my book, How We Survived Prostate Cancer: What we did and what we should have done. Dean’s voice is all through it. At first, when I began writing it, he kept his distance, but thanks to a handy tape recorder, he’s had lots to say.

In part I joined the meeting because, at the three year point I was actively writing this book, and Man to Man has a research dimension for me. But if there had been no book goading me to join, I’d be a lot sadder and more confused and certainly more ignorant. The big questions in paragraph 2 above come up in an oblique sense occasionally–everyone is scared of them, I sense. There’s plenty of practical information to be had, and then there are the blessings. (I would have hated to call them this once, because I was so angry at cancer and at life).

Blessing #1: We’ve made good friends in the group we hope to keep for life.

Blessing #2: Others come who just received a diagnosis. These are the smart ones who didn’t wait three years. We get to ease their confusion and terror and give them a wealth of perspectives on the various treatment options. There is something really healing about this process–that our suffering was not wasted.

So, to anyone out there–especially women–who are wondering what to do, I say join a support group even if you have to go alone. Even if your partner isn’t ready, and the group has that forbidding title “Man to Man.” Get in your car or on the subway or bus, whatever. Strength is in community.

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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.


Life Without P.S.A. Screening: Russian Roulette?

March 10, 2010

Millions of men woke this morning to the news that what had been done to their bodies in the name of stopping prostate cancer, may after all have been “a mistake.” Writing in The New York Times (Tuesday, March 10, 2010), Dr. Richard J. Ablin, who discovered prostate specific antigen in 1970, calls the routine use of P.S.A. to screen for prostate cancer “hardly more effective than a coin toss.” He points out (as many health-care professionals have been unwilling until recently to admit) that men, post treatment, “…in all likelihood can no longer function sexually or stay out of the bathroom for long.”

American men have, according to recent statistics, a 16 % lifetime chance of receiving a diagnosis of prostate cancer, but only a 3 % chance of dying from it, because most prostate cancers are slow-growing:  the cancer you die with, not of.

Dr. Ablin admits, as we all know, that, so far, we can’t distinguish between the cancer that will kill you and the one that won’t.

Who is the “you” in the previous paragraph?  A statistic or a real flesh-and-blood man?

How does Dr. Ablin imagine it feels to wake up and read that your life-altering treatment has been a mistake? What is a statistic to a life?  How many men with rapidly-escalating P.S.A.’s had Gleason Scores of 7 or above and are alive today as a result of this test? Admittedly, my own husband, whose Gleason was a routine 6, might well have been unnecessarily treated, although his P.S.A. velocity at the time of prostate cancer diagnosis was notable.

It may be that Dr. Ablin’s metaphor, the coin toss, is off the point. It has been said that generally one in ten men with a positive biopsy has a fast-moving prostate cancer that will kill if left untreated.

Universal P.S.A. screening may be a coin toss; but its absence returns us to Russian Roulette. P.S.A. tells us that it might be cancer, and if so, a virulent bullet might be in one of several chambers. Surely knowing this is so, and going for a biopsy, painful as it is, is more valuable than ignorance. If, as Dr. Ablin suggests, “testing should absolutely not be deployed to screen the entire population over the age of 50,” then my husband, among others, might have waited long enough to hear the word “metastasis,” or the even more chilling, the words, “your cancer has gone to bone.”

If P.S.A. as a universal screening tool is inappropriate, then rather than scrapping it for the general population, perhaps doctors should learn to educate their patients and partners to the real truth about the likely sexual, urinary and even bowel consequences of treatment. Then men can make a truly informed choice, as many European men do, who choose to watch and wait.

As long as men are alive who have received these treatments in good faith, Dr. Ablin’s argument stands as the ultimate insult to their experience. He shames what he calls profit-driven public health initiatives, but there are men whose lives have been spared, and those lives are worth something after all. The real shame lies in valuing statistics over individuals.


You’re Not Alone if You’re Too Tired for Sex

March 9, 2010

“Study Finds Many Are Too Tired for Sex” notes the Science page of The New York Times (Tuesday, March 9, 2010).  For men and their partners who’ve suffered and survived prostate cancer, it may come as a relief to learn we’re not alone. The article observes that “one in every four Americans married or living with someone say they are so sleep-deprived that they are often too tired to have sex.” Insomnia and sleep deprivation are obvious factors as are stress in its various guises–including work, health and fiscal matters; alcohol and late-night television weigh in too.

If the general public is already experiencing stress and sleeplessness, how much worse is it for couples post prostate cancer treatment? And how much farther down the list of physical needs might sexual activity be for these couples? Certainly, we’ve all suffered our share of sleep deprivation (I can easily recall my husband jumping up six or more times a night to urinate, and, as a result of treatments, he can add tinnitis (ringing in the ears) to his list of chronic afflictions. The cancer diagnosis itself is hardly “something to sleep on,” and then, for our particular population, add loss of libido for some men and the challenge of actually getting an erection for almost every man treated. Women are affected too, our sense of attractiveness perhaps diminished and our own sleep patterns and living patterns greatly altered.

How do we de-stress our lives? Is it possible to get rest? How does a couple go about reclaiming intimacy?  We’re all working on these problems, and we’re not alone. Does anybody out there have any ideas for ways of reclaiming both rest and intimacy?


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.