For almost thirty years my husband and I have been eating a diet of rice, with no concern as to what type of foods went with it. We did eat soybean products, mainly tofu, on occasion, only because my husband, being of part Asian descent, was raised on this type of food. But lately we have become much more serious about soybeans.

In 1966 I had my left kidney removed due to kidney cancer. In 1986 they said that my pancreas was not functioning properly and prescribed pills to replace the missing pancreatic enzymes. I don't digest food properly without the pills.

In 1987 I was diagnosed with VHL, with multiple tumors and cysts on various organs, including my right kidney, pancreas, liver, brain and eye. I began to notice pain and difficulty after eating certain foods, especially meat or protein. I also noticed if the amount of food was not in moderation it would affect my abdomen (pain) and my only remaining kidney. I was forced to concentrate on my diet and limit amounts of food, not only to feel better but to preserve my life.¹

About six months ago, my husband noticed an article in the Los Angeles Times, reprinted from the New York Times, about the benefits of a soybean diet and the effect of genistein² on tumor growth. It sounded very much like my particular problem of abnormal blood vessel development causing hemangioblastomas. These were the type of tumors I had removed from various parts of my body over the years. At this point we decided to seriously concentrate on this particular diet. We began eating, on a daily basis, moderate amounts of food that would mainly consist of tofu, tempe, soup (mostly miso) along with more cruciferous vegetables (usually cut up in the soup) with a little pasta, less fat, high fiber foods, and more fruit. Not only did we lose over 30 pounds in no time, but we discovered an overall feeling of wellness.

Since diet has become a crucial factor in my life, it became essential to choose food wisely to avoid unnecessary pain and agony to my already fragile system. I also have diabetes.³ With these limited amounts of food, less fat and proteins, my blood sugar, which was previously a problem, is now controlled by the diet alone.

When I went back for my latest tests, the follow-ups from my last brain surgery in December 1992, I was told that that tumor had not returned, and that the others have not increased in size. The doctor commented that I must be doing something right! I really believe the soybean diet contributed to my continuing good health. Eating more fruit and high-fiber foods has also benefitted my husband, since he is a survivor of colon cancer.

We believe we have discovered something important and beneficial to our well-being and hope others will try the diet and hopefully reap the benefits as we did. Thank you for giving me this opportunity to share my diet experience with everyone.

I've been through many ups and downs over the years living with this disease. My life has changed a lot and I'm learning to cope with my limitations. I've been fortunate to have a loving and caring husband by my side to pick me up each time the chips are down.

I'm sitting here calming down from our latest 6.6 earthquake tremor. Talk about shaky! Our house took quite a beating, but we're alive and grateful.

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1. The symptoms Darlene describes are not uncommon with certain kinds of pancreatic cysts, depending on size and location. The pressures exerted by the cysts can disrupt the normal flow of digestive enzymes produced by the pancreas, resulting in difficulty digesting food.

2. See reprint of this article in this issue, Scientists Unraveling Why Vegetables Retard Cancer. See also, Families Share Diet and Exercise Tips

3. Diabetes, a disturbance in the body’s normal mechanism for regulating blood sugar, is also a rare consequence of VHL cysts of the pancreas. As Darlene describes, it can usually be managed with diet.

As published in the VHL Family Forum 2:1, March 1994. For permission to reprint, please contact the VHL Family Alliance at editor@vhl.org.. Further information is available from the VHL Family Alliance at info@vhl.org.

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