Victoria Hallerman, Health Activist and Author
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Excerpt from
HOW WE SURVIVED PROSTATE CANCER: WHAT WE DID AND WHAT WE SHOULD HAVE DONE
by Victoria Hallerman
Copyright © 2009 Victoria Hallerman
Reprinted with permission
from Newmarket Press

www.newmarketpress.com

 


“This book began as a journal to save my wits. It developed into a memoir lamenting the lack of comprehensible information afforded to many patients by modern medicine, and has morphed at last into a cautionary tale regretting the many errors we made as patient and partner. My friend and adviser, Elaine Albert, nurse and trained group facilitator, recently observed, “But you and Dean did everything wrong!” We did. We never got a second or third opinion. We shopped for medicine the way some people shop for expensive shoes—going to the “best” places—and we were disastrously ignorant of treatment aftereffects. This last was a result of bad doctoring, magical thinking, and an unfortunately flawed support group that discouraged any real sense of community. The actual physical result—that biopsies have come and gone and that Dean to date is cancer-free—is our great blessing. But our marriage has only recently begun to crawl out from under the treatment rock that fell on it six years ago. We learned a lot, and every day brings a new lesson. Meanwhile, others can benefit from our training in the school of experience.

New strategies are evolving for treating prostate cancer, but the major treatment choices are still, as they were for us six years ago: prostatectomy (the gland surgically removed); external beam radiation (radiation treatments over a course of weeks or months, nowadays taking the form of the more precisely targeted IMRT: intensity modulated radiation therapy); and finally, another form of radiation, the treatment Dean chose, brachytherapy (an outpatient surgical procedure in which radioactive “seeds” are “planted” strategically in the prostate).

Hormone ablation or deprivation—in which the body’s production of testosterone is shut down—sometimes assists radiation, serving as a “palliative” treatment. It works this way: since testosterone feeds the growth of prostate cancer cells as gasoline feeds a fire, hormone therapy (reducing testosterone via shots and pills to near zero) is a way of discouraging that growth. It is also used, as in Dean’s case, to shrink the prostate in advance of brachytherapy. But this drastic testosterone elimination would, for him, still on the youngish side of fifty-six, prove a particular hell: E.D., mood swings, hot flashes, lethargy, and a total loss of libido.

There is no “best” treatment for prostate cancer (often abbreviated as PCa), no one-size-fits-all. None of the major methods is without hazard for urinary and sexual quality of life, and to make matters more confusing, medical talk on this disease changes daily. For example, there is a sizable contingent of doctors and researchers who now lean in the direction of recommending what is called active surveillance (that is, “watchful waiting”)—doing nothing at all, just periodic biopsies—for men whose cancers are at a low stage, as Dean’s was. PSA screening itself has come under heavy fire recently. Are we overtreating a large population of men—causing unnecessary incontinence, E.D., and general suffering—when many of these men would live on into old age and die of something else?

Others argue, rightly, that without PSA we don’t know which men harbor these cancers, and that approximately 1 man in 10 would probably die of an atypically fast-growing prostate cancer. Some men do choose no treatment at all, after a positive biopsy, but that’s hard, too, living with the knowledge of cancer, not knowing if it will accelerate. Dean says that, for all he has been through, he is (1) glad he knew and (2) without regret at having taken action of some kind. He would never have been happy as a watchful waiter.

That said, knowing what we know now—about prostate size and seed implantation, about the smart way to use the arsenal of medical weapons available to a youngish man—we wish we’d gone for at least a second opinion. Surgical removal of the prostate is often a good treatment choice if the patient is young and healthy enough (sixty-five or under), which reserves radiation for any later recurrence. Ironically, in Dean’s case, the hormone treatments undercut any supposed potency-sparing benefits the seeds might have offered.

Dean expects, eventually, to be a treatment “old-timer,” like those patients a hundred years ago who received arsenic to combat venereal disease before there was such a thing as penicillin. Wistfully the other day he wondered aloud what it might be like to have a libido again. It isn’t just erections that are missing, but the whole idea of sensuality.

We can talk about it now, but not so long ago depression and silence, and a certain resulting distance, chilled our marriage. A woman I recently spoke to confesses to feeling a sadness she wasn’t entirely aware of, buried since her husband had his prostatectomy over four years ago. There seemed little time back then to reflect on how their life together had changed. The growing public conversation about quality of life after prostate cancer treatment, however, is changing the way doctors, patients, and partners think about treatment.

But Dean is alive. We celebrate this fact every morning at breakfast, every evening that finds us together in our kitchen or cuddling before lights out.”