Editor's Note: The following article is reprinted from the National Brain Tumor Foundation (1-800-934-CURE). As you read this, and other articles in the press intended for "cancer patients" or people with other kinds of tumors, realize that while VHL is a kind of cancer, where the genetic changes which cause VHL tumors to form are the same kinds of genetic changes that lead to other kinds of tumors, therapies which work for some kinds of cancers may or may not work against VHL. Recommendations of a general nature for cancer prevention are usually applicable, but use of silenium to prevent bladder cancer will have no bearing on VHL. There are no studies which show that complementary therapies do or do not work for VHL. Unless or until we do, each of us must make our own determinations whether a complementary therapy is likely to help. By pooling our information, we are hoping to learn which ones look more likely than others.

Please participate in our Survey of Complementary Therapies and VHL

Nutritional supplements, Chinese herbs, acupuncture, macrobiotics -- the array of therapies available beyond hospital walls can be confusing for people with VHL struggling with decisions about their health care.

"The best thing a person can do is to select a regimen that makes sense to them individually," says Don Flint, associate director of the Cancer Project at Commonweal. "For instance, one person may be able to undertake a rigorous raw foods diet, while another person may find it too stressful to commit to that kind of eating plan. It's better to use what fits for you."

Commonweal, a nonprofit health organization in Bolinas, California, offers one-week retreats and other services to cancer patients to assist them in seeking physical, emotional, and spiritual healing.

At Commonweal, which was featured in Bill Moyers PBS series Healing and the Mind, unconventional medical approaches are referred to as "complementary therapies." That word choice reflects the organization's philosophy that these therapies should be used to enhance mainstream treatments like surgery and chemotherapy, not replace them.

"We feel that the best way for people to use complementary therapies is in conjunction with mainstream therapies," Flint says. They should evaluate mainstream therapies on their own merits and then look at whatever complementary therapies might be used additionally."

VHL patients may choose complementary therapies for any number of reasons: to strengthen stamina, to lessen pain, or to lower stress. Visualization or imagery exercises can calm the nerves before surgery or an appointment for an MRI scan; and massage therapies, like Therapeutic Touch, can ease joint pains.

"In the experience of many people," Flint says, "these complementary therapies contribute to the quality of their lives and to symptom control. They can also minimize side effects of mainstream therapies and help people cope with the experience of having [a chronic disease and the threat of cancer] which can be tremendously stressful and unsettling."

"Many of these approaches," he adds, "are simply lifestyle changes that anyone could make in order to become healthier. If you have cancer it just makes sense to do all you can to maintain a generally high level of health. Healthier people -- or, in medical terms, people with a better functional status -- tolerate medical treatments better and they experience less pain. Many studies with many different types of cancers have also shown that functional status can be a contributor to longer survival."

But can complementary therapies actually help a person live longer? As with many aspects of unconventional health care, the evidence needed to answer that question is inconclusive but compelling.

Flint cites several research studies which demonstrate the healing potential of complementary therapies: A small study at Tulane University concluded that cancer patients who used a modified macrobiotic diet lived twice as long as those who did not. The results of another report in the Journal of Urology shows that antioxidants combined with selenium cut the rate of recurrence of bladder cancer by half. And an often-quoted 1998 study of Dr. Randolph Byrd found that cardiac patients who were being prayed for took fewer antibiotics and experienced fewer complications than patients in the control group who were not having prayers said for them. (See "Faith and Healing," Time magazine cover story, June 24, 1996 issue)

Dr. David Spiegel of Stanford has done groundbreaking work in documenting the impact of psycho-social factors on health. Dr. Spiegel, author of Living Beyond Limits, studied women with breast cancer and found that those who participated in support groups lived, on average, twice as long as those who did not participate.

Significantly, though some reports may claim otherwise, none of the complementary therapies have yet been proven to offer a definitive cure for cancer.

"Among the complementary therapies," says Flint, "there is nothing that is a systematic and predictable cure for cancer. If there was a therapy among the complementary therapies that was curing cancer, we certainly would have seen it, and we just haven't . . . which is not to say that there aren't many, many individuals that I have personally talked to who feel that they have cured their cancers using these therapies."

The anecdotes about successful cures persist, Flint explains, because research in the field has yet to account for vast differences in individual responses to complementary therapies.

"There is no obvious pattern of effectiveness in using complementary therapies with various types of cancer," he says. "In other words, if you had two women with a basically identical cancer diagnosis, one might do well on a given diet and the other one would not."

"Someday," he continues, "studies may show that a particular nutritional therapy may be more effective with breast cancer or with brain tumors. But we really haven't seen that to be the case. For now, there are very few studies and the studies that do exist are either poorly designed, or they involve very few people, or they haven't been replicated . . . it's not to say that these therapies won't someday show a pattern of effectiveness in treating cancer, but at this point there just isn't a lot of money going into finding out."

The lack of adequate research means that brain tumor patients considering complementary therapies must investigate various treatments for themselves. When choosing a therapy, Flint recommends a thorough questioning of practitioners.

"Find out where the therapy comes from and who is behind it," he says. "Also question claims of effectiveness. What does it mean if a program says it is '80% effective with cancer patients'? Does that mean 80% of the people experienced symptom relief or what?"

Mainstream treatments, too, should be subject to similar scrutiny.

As Flint observes: "When people are told that they have so long to live or that only 50 percent of patients respond to a particular treatment the thing to remember is this -- You are not a statistic. The statistics are only averages of what can be expected in a whole population.

"We believe," he adds, "there is a great possibility that people who engage with their illness and support their treatment with complementary therapies can move themselves well out to the end of the survival curve and live longer than expected."

Please participate in our Survey of Complementary Therapies and VHL

As published in the VHL Family Forum 5:1, March 1997. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.