Leveling the Battlefield : Prostate cancer: Men are demanding research funds for this neglected disease.
Every Wednesday evening, members of a prostate cancer research and support group meet in San Diego to swap stories about their private battles. A dozen men age 56 to 78 discuss the tragic irony that the seminal gland that gives men potency, pleasure and procreation harbors a cellular time bomb of impotence, incontinence and death.
Last year, 3,321 men died of prostate cancer in California; in the past five years, 81,000 cases were diagnosed here. Prostate cancer is the No. 1 cancer to strike men in the U.S. and the No. 2 killer, after lung cancer. Prostate cancer maims and kills men at roughly the same rates that breast cancer disfigures and kills women.
Women have made breast cancer a crusade, successfully lobbying for research funding. Men handle it differently. Many suffer in silence, ashamed because they have been castrated, or rendered impotent, or burned so badly by radiation that they must wear diapers. Others gather in support groups to offer advice and comfort. In an intimate environment, men slowly shed armor and bare their souls. Listen to their stories:
After retiring from the phone company, Sandy went for annual checkups at his HMO. An assistant detected a hard spot on Sandy’s prostate, but Sandy’s doctor never followed up with a PSA (prostate specific antigen)--a simple blood test designed to detect prostate cancer. Two checkups later, another doctor told Sandy, “This is a classic prostate tumor.” Sandy finally got a PSA and a biopsy--too late. The cancer had already spread; he now faced a fatal disease without hope of a cure. Without giving Sandy time to get a second opinion, a urologist removed Sandy’s testicles the next day.
Recalling the incident before the group, Sandy breaks into tears, no longer afraid to show emotion. “I feel good,” he says stoically. No wimp, Sandy sued the HMO and got a $100,000 settlement.
“That’s the cost of doing business,” says Bob, 58, whose health provider refused to give him an experimental seed-implant treatment that preserves potency, a crucial issue for younger men. “It’s cheaper for them to settle a few cases than to provide screenings and treatments.”
Cost-conscious HMOs argue that screenings and treatment aren’t warranted, because urologists and oncologists disagree whether aggressive treatment prolongs lives. But for any individual, early detection and treatment may be lifesavers.
In the face of ambiguity, men must make choices. Mac, diagnosed in 1981, chose a macrobiotic diet. That bought him two years, until a Canadian doctor gave him hormone treatments. Now 76, Mac has survived 14 years; he’s partially paralyzed, but still fighting.
For prostate cancer, there is no “right” answer. Men need to educate themselves about the disease and the risks of treatment to make informed choices that reflect their values.
Research is also urgently needed. Nationally, prostate research funding is only a fraction of that allocated to breast cancer. The state of California gives not one cent to prostate cancer research, but has earmarked $44 million to $56 million a year for breast cancer research and screening.
To eliminate this inequity, the Legislature overwhelmingly passed a bill to establish a prostate cancer research program. Gov. Pete Wilson vetoed the bill in November, citing concerns about cost and administration.
California now enjoys a budget surplus and a grass-roots campaign to override the governor’s veto is underway. Word is going out for survivors to converge on Sacramento for a rally on Jan. 22 to educate state leaders about prostate cancer. Members of the San Diego-based support group are going to attend. So are the women whose lives are deeply affected by prostate cancer and its cruel treatments. Cries one group member’s wife, angered by the government’s deafness to her husband’s plight: “Gov. Wilson, what’s your PSA?”
