A Spotlight on Cancer of Prostate : Health: Men are generally unwilling to discuss the disease with their doctor or other men. It has quietly become the second leading cancer killer of males.
“What men with prostate cancer need is someone like Betty Ford,” says Norman Gollin, founder of a Santa-Monica-based support group for prostate cancer patients.
After Ford announced in 1974 that she had breast cancer, the number of women seeking mammography soared, funds for breast cancer research increased and new treatment options followed within a decade.
With or without a famous advocate leading the way, members of Gollin’s group say they are determined to generate the information, support and political power for men with prostate cancer that has long been available to women with breast cancer.
They admit they have a long way to go.
The Prostate Cancer Group, which meets under the auspices of the Santa Monica Wellness Community, is part of a grass-roots network forming nationwide under the leadership of a national organization in Michigan called Patient Advocates for Advanced Cancer Treatment (PAACT). The groups’ mission is to help members beat prostate cancer and raise public consciousness about the disease’s high incidence and severity, Gollin says.
Prostate cancer is the most common cancer among men and is the second leading cancer killer of men (lung cancer is first). One in 11 U.S. men will develop the disease; 30,000 die from it each year.
“There is very little said, publicly, about prostate cancer,” says Gollin, 71, a graphic designer who was diagnosed with the disease two years ago. “But there is so much conflicting information on prostate cancer treatment. I think we’re all just hungry for information.”
Several factors have combined to leave men with prostate cancer without the resources available to individuals with breast or lung cancer, Gollin says.
One factor is the complexity of prostate cancer, which leaves many patients feeling helpless and the medical community divided about the best approach to treatment.
Another factor is that prostate cancer patients also blame themselves. Men are generally unwilling to talk about prostate cancer with each other or with their physicians--thereby increasing awareness--because the disease raises sensitive issues such as aging and sexuality.
“In this culture, men have not always been brought up to share their doubts and fears with other men. That makes what we do especially important,” says Mort Fine, 73, a retired writer and producer who helped found the group with Gollin.
Lloyd Ney, who formed the national group, PAACT, six years ago, puts it bluntly: “A man has to maintain his macho image, even if it kills him. They don’t come out and acknowledge prostate cancer. They don’t have their annual physical examinations to catch it in its early stages when it’s curable.”
Like breast cancer, prostate cancer is highly curable if caught early but can be deadly if diagnosed at an advanced stage. Breast cancer can be detected through mammography, self-examination or a physician’s examination. The options are fewer for men; prostate cancer can be detected in an early stage through a rectal examination. The prostate is a walnut-size organ resting above the bladder that can be felt through the wall of the rectum. The gland secretes fluid that makes up part of the semen.
Survival rates have improved since the 1940s. More than 80% of patients whose tumors are diagnosed at an early stage are alive five years after treatment.
Prostate cancer usually spreads without symptoms, making early detection by rectal examination crucial. But a National Cancer Institute report showed that only 50% of white men and 35% of black men have had a prostate exam for screening. The American Cancer Society recommends that men older than 40 have a rectal exam each year.
Even funding for research on prostate cancer lags behind other more-publicized diseases, Gollin says. The federal government will spend an estimated $77 million on breast cancer research this year but $13.2 million for prostate cancer research, the National Cancer Institute says. Breast cancer affects about 150,000 women compared to 100,000 prostate cancer patients.
But, for reasons unclear, prostate cancer rates continue to increase in the United States (an increase of about 15% since 1970). The disease is most common in men over age 70 but can occur in men 40.
Gollin developed the idea of a support group more than a year ago after growing frustrated with conflicting advice from doctors about his treatment.
He, Fine and James Bright, of Hawthorne, organized the Prostate Cancer Group so patients could exchange information; in effect, to hear what others’ doctors were telling them. The group has grown to 50 members.
“The focus of the group is how we heal,” Bright, 54, says. “We consolidate our information. (Members) have guys around them who have the same problem. They don’t have to feel isolated and that there is no one to discuss this with.”
The group has invited a physician to speak about recent advances in treatment. And, last month, they invited their spouses to join them to listen to a sex therapist. (Many forms of prostate cancer treatment affect sexual potency.)
The group had such an uproarious good time at that meeting that several people in the brain cancer survivors’ group meeting next door stopped by to listen in, Gollin says.
Ney agrees that the popularity of support groups for prostate cancer patients is testimony that many men relish the chance to share information in a comfortable setting.
But the main objective of the group is how to beat cancer, Gollin says.
Treatment for prostate cancer varies depending on the stage of cancer and the patient’s age, says Dr. Michael T. Macfarlane, an assistant professor at UCLA and chief of urology at the Veterans Administration Medical Center in Sepulveda: “Age is important in prostate cancer because it’s a very slow-growing tumor. For someone who is 80, we don’t recommend a lot of aggressive therapy.”
But for younger men with a tumor that has not spread, doctors often disagree on whether surgery or radiation therapy is best. Because prostate cancer depends on the presence of the male sex hormone, testosterone, to grow, other doctors advocate surgery, followed by hormone therapy to stop testosterone production. “That is where some of the controversy still lies, over which is better,” surgery or radiation, Macfarlane says.
While both surgery and radiation therapy may affect sexual potency and urinary control, at least temporarily, Macfarlane says he often favors surgery to remove the diseased prostate because it eliminates the chance of cancer recurring in the gland.
For more advanced prostate cancer, doctors often prescribe hormonal therapy with the drugs leuprolide and flutamide. “Hormonal therapy only slows the growth of cancer,” Macfarlane says. “Prostate cells are very hormonally dependent for growth. If you remove all the male sex hormone, testosterone, the prostate cells will shrink down and their ability to grow slows dramatically. It has superb results in advanced disease. Eventually, however, the cells learn to grow without (testosterone), and they will begin to grow again.”
Hormonal therapy destroys sexual potency, but Ney says his group advocates wider use of the therapy.
Support groups like Ney’s and Gollin’s are also urging more research on screening tests. Researchers, including a group at the VA center in Sepulveda, are testing a method to detect a tumor marker called prostatic specific antigen, or PSA, in blood as a way of screening for early prostate cancer.
So far, Macfarlane says, studies show PSA is elevated from both prostate cancer and benign prostate disease but may be more elevated in the presence of cancer.
“We’re trying to see if we can use that as a screening test,” he says. “A simple blood test would be easier. It would be more objective. One of the big problems with rectal examination is that a lot of it depends on the examiner.
“But (the PSA test) may cause a lot of false positives, and it may be cost-ineffective. We don’t know right now.”
Advances in screening for the disease would be an important step, Bright says. The American Cancer Society says that more than 1 million U.S. men may have prostate cancer but not know it.
“If prostate cancer is going to be cured in my lifetime it’s going to take groups like ours bringing more awareness to the community and to doctors,” he says. “It’s going to take advocacy to point out the need for more research.”
WHERE TO CALL
For information on the Prostate Cancer Group, call the Santa Monica Wellness Community at (213) 393-1415.
Prostate Cancer Death Rates
Since 1950, prostate cancer rates have increased about 15%. One in 11 men develop prostate cancer; Among black men, the incident rate is one in nine. Cancer Prrevention Awareness Awareness of cancer testing procedures is relatively low among minorities. Percentage of people by race who unaware of tests for prostate cancer (ages 40+): Hispanic men: 29.3% Black men: 38.2% White men: 20.2% Source: National Center for Health Statistics and Bureau of the Census; National Health Interview Survey, 1987.
