At the final summary session of this conference

Participant: I'm Ann Fonfa, speaking as a breast cancer patient and activist. Dr. Jonas, it's very important to point out that when you say public, you mean patient participation. We think that needs to be in every aspect of all decision-making at all ends of NIH, NCI and down to OAM.

Another question I have is there's been a lot of discussion about soy products and estrogenic products and the dangers. I would like to have someone comment on the fact that, as Dr. Wynder mentioned, in Asia they have different levels of breast cancer, lower levels, different responses. Obviously soy products are part of their diet, along with seafood and iodine. It seems to me that our life experience counts in the fact that that exists. Soy can't be as dangerous as we keep hearing. It may be, and also let's do some studies on it. Thank you.

Dr. Gordon is James Gordon,PhD, Director of the Center for Mind Body Medicine in Washington, D.C. and chair of the meeting. Dr. Mary Ann Richardson,MPH is directing the center at University of Texas studying alternative cancer therapies. Dr. Wayne Jonas, MD was the acting head of the (then)Office of Alternative Medicine, NIH and William Fair, MD, a doctor at Memorial Sloan Kettering, NYC who got colon cancer and began exploring complementary and alternative therapies and Dr. Ernst Wynder, MD was the head of the American Health Foundation and an early leader in the fight against tobacco use. He passed away in 1999. Dr. Ralph Moss, PhD, writes about alternative therapies, has a website and several excellent books.

Dr. Gordon: Wayne, do you want to comment? Mary Ann, and then Bill.

Dr. Jonas: There's discussion about both the potential benefits and dangers of soy proteins, and specifically soy estrogens. Soy estrogens are thought to be the components of soy that are having influence, or maybe having influence, on a number of endocrine-related illnesses, including breast cancer. There's a considerable surge in research now looking at soy estrogens, soy-derived estrogens and soy proteins, both in terms of refined extracts as well as dietary supplements. They're looking at the effects, for example, of soy-based diets on cardiovascular risk factors, on post-menopausal symptoms and this type of thing.

Any time you have an estrogen or estrogen-related compound, then the effects can be potentially beneficial or potentially risky. Tamoxifen is an example of that. It produces both benefits and increased risks. These products have the same potential and should be researched. One of our centers in Stanford is looking into this and doing some studies currently on soy-based diets and soy-supplemented diets in post-menopausal women and in cardiovascular risk factors. There are a number of other groups that are, too.

Dr. Fair: I hope that no one would get the idea from this meeting that soy is bad. There are some problems that have been pointed out due, as Wayne said, to the estrogenic effect. But soy is an integral part of the trial that Dr. Wynder and I are running. We give 40 grams of soy powder a day. In the study I'm involved in with Dean Ornish at UCSF, we also use soy. In our laboratories we've been able to show dramatic slowing of the growth rate of prostatic cancer in the animals, and a significant drop in PSA when those animals bearing a human prostate cancer were given soy products. It's like a lot of other things. In excess, soy can be bad. But the benefits, at least at this point, far outweigh the potential disadvantages.

Dr. Gordon: Would you say the same thing about breast cancer?

Dr. Fair: We haven't done any experiments in breast cancer. Certainly the indirect evidence, as Ernst mentioned, from the Oriental studies would indicate maybe that's also the case.

Dr. Wynder: Jim, let me comment on that. What's very important is that we study all these factors separately from one another. We are now studying soy with and without isoflavone. In prostate cancer we have it rather easy, because we study the effect on PSA. In breast cancer, Petrakis has shown that soy products increase breast fluid. I didn't want to bother you with statistics, but I'd like you to remember one piece of statistics. In terms of a long-term effect, to determine long-term a 10% difference in terms of breast cancer mortality, you need to have for stage I and II disease 2,500 patients. Such studies can only be done in a large-scale trial.

Dr. Moss: We also have to be very careful that we maintain a sense of fairness and balance and common sense when we look at ingredients in foods. My favorite example is beets. There's arsenic in beets. If you were to isolate the arsenic from the beets, you could kill whatever rats or humans you wanted to. But that doesn't make beets dangerous. There's so little arsenic that it's absolutely harmless. In the past we've had examples of polemical, ideological studies in food and herbs, which were designed to denigrate those products and to dissuade people from turning towards more natural solutions.

Dr. Gordon: I want to respond to one thing. I very much agree with you that there needs to be patient representation. One of the important things about the OAM Advisory Council is there is significant representation of patients, of people who have had experience with a variety of illnesses, including particularly breast cancer. The aim is that there will always be citizen representatives on all of those committees. That's right, isn't it Wayne? I wanted to make that explicit.

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