Families Share Diet and Exercise Tips

A group of families with von Hippel-Lindau disease has been sharing diet and exercise tips during the past year.

Since people with VHL are a relatively small population, no scientific studies exist yet to guide us in these areas. The information we have assembled contains lessons learned from related disorders, some interesting theories, and some good old "common sense." We will appreciate your own ideas and feedback on these topics.

Please note that these hints are to be added to your normal medical check-ups, and are not a substitute for the regular screening suggested in the VHL Handbook¹ and recommended by your medical team.

VHL is in a group of diseases called "hereditary cancers" because some VHL tumors are malignant. While most VHL tumors are not malignant and do not metastasize, or spread to other tissues, the process of tumor formation is the same general process that other tumors go through. Therefore, techniques which "prevent cancer," -- inhibit tumor formation, prevent changes in genes, and reduce stress -- can be applied to VHL.

While this list was compiled with VHL patients in mind, you will find that there is good information here for all family members -- indeed, for everyone.

There are thousands of books and articles on nutrition and cancer prevention. Your local library, hospital, or the local office of the American Cancer Society are good resources on this topic.²

Nutritionists now recommend keeping the amount of protein per day within the recommendations of the Food Guide Pyramid. Select foods from the pyramid in variety, moderation, and balance. If you choose a vegetable source, be sure to balance it so as to get a complete protein. See a good vegetarian cookbook, such as Diet for a Small Planet,³ which discusses complete and incomplete proteins.

VHL families who have studied this topic on their own or with nutrition counselors have provided the following tips.

- Quit Smoking. Smoking is the biggest cancer risk of all — the main cause of lung cancer and 30% of all cancers. It has been specifically isolated as a cause of kidney cancer. Since people with VHL are already at risk for kidney cancer, it significantly increases that risk. For people with VHL the particular risk factor is the nicotine. For this reason it is best to avoid other nicotine sources such as chewing tobacco and the patch. Try Smoke Enders or other similar support programs instead.

- Avoid chemical additives in foods. We do not know what impact food additives may have, but as a general rule, if you can’t pronounce it, don’t eat it.

- Consider avoiding growth hormone. Growth hormones are fed to cattle and chickens in the United States to increase food production. Through the use of growth hormones, chickens go from egg to meat market in six weeks. We do not understand the impact on humans of eating this much additional growth hormone.

The FDA and many physicians feel that since Growth Hormone is a protein, it is broken down in the stomach and is not of concern. Other people believe that it may increase the rate of growth of tumors.

If you would like to avoid eating Growth Hormone, ask your butcher whether their beef or chicken was grown using injected Growth Hormone.

- Eat your vegetables, especially soybeans and cruciferous vegetables like broccoli, Brussel sprouts, cabbage, cauliflower, Chinese cabbage, kale, mustard, rutabaga, and turnips. Beta-carotene and other substances in vegetables counteract environmental effects which can modify genes and cause tumors to form. Scientists are also finding that a substance in these vegetables, named genistein, blocks an event called angiogenesis, the growth of new blood vessels.⁴ Hemangiomas are formed from such blood vessels. By inhibiting capillary growth, genistein just may keep new tumors from growing beyond harmless dimensions.

- Keep an eye on your stress vitamins. Periods of stress consume greater amounts of vitamins, especially C, E, and the B complex. When stress is high, increase your intake of foods rich in these vitamins, especially around the time of those checkups, before and after treatments, and during times of decision-making. It is particularly important that B vitamins be taken from dietary sources rather than pills, since they need to be taken in balance with one another. Taking artificial doses of one can cause a deficiency in another. Good dietary sources of the B complex are liver, brewer's yeast,⁶ and wheat germ.

Under normal circumstances, if you eat a balanced diet including a green salad, a glass of juice, and at least 4-5 servings of fruits and vegetables a day, you should not need to take extra vitamins. Under stress, add another few servings of fruits, and add wheat germ and/or brewer's yeast to casseroles and breads. Choose an orange rather than coffee and donut.

- A number of people report mild to moderate hearing loss or ringing in the ears. First, check to make sure this is not an early sign of a brain tumor. When this has been ruled out, try adding Vitamin E to your diet — an extra 500 mg. per day for 2-3 weeks — and see if this makes a difference. Make sure too that you are getting enough vitamin B's. In one study of people who work in high-decibel workplaces, nearly half the men with tinnitus [ringing in the ears] and hearing loss were deficient in vitamin B12.⁷ Good sources of dietary B12 include lean meat, poultry, fish, shellfish, and dairy foods. Several B vitamins play a role in keeping all nerves healthy, not just those that aid hearing.

- Use alcohol in moderation. Estrogen is suspected of promoting tumor growth, especially in breast cancer. One study links alcohol consumption with a rise in estrogen levels. "The evidence for a subtle dose-response relationship [between alcohol and estrogen] appears to be getting stronger."⁸ While this study pertains to breast cancer, not VHL, it may have some relevance.9

Exercise Tips

Except for periods following surgery or eye procedures (laser or cryotherapy), get lots of moderate exercise, to keep your cardiovascular health strong. Following any medical procedure, check with your doctor regarding resuming exercise.

It is particularly important to be conscious of making small reductions in exertive activites for 2-3 days following eye procedures. Even though you probably feel no injury at all, remember that there is a small wound, a tiny cauterization, which is a temporary weakness in the wall of some of the capillaries in your eye. It makes sense not to pump too much pressure through that weakened vascular area for a couple of days, until it heals. Most normal activites are fine; just don’t plan to move furniture or heavy boxes for a couple of days, and perhaps go walking instead of jogging for a day or two to reduce the amount of impact. Follow your doctor's recommendations about limiting aspirin and other blood-thinning medications as well.

Avoid activities which cause impact to the head, like boxing, as there is evidence that impact to the head can cause retinal detachment, and may be implicated in triggering or accelerating the growth of VHL brain tumors.

We know that moderate amounts of exercise are good for everyone — walking, swimming, yoga and low impact aerobics are especially good. Tennis, jogging, and higher impact aerobics are probably okay depending on your own medical condition, but should be checked with your medical team, especially if there is concern about retinal detachment.

Some families have reported an observation that excessively strenuous exercise may encourage the growth of tumors — not cause them, but perhaps increase their growth rate. This is only a family observation, not proven nor medically verified. Excessive aerobic exercise which pumps your heart rate above the recommended maximum for your age, power weight lifting which causes your veins to stand out on your head, or operating a jack-hammer, may not be a good idea.. The theory is that if a hemangioma is a structure made up of blood vessels, then putting that structure under excessive pressure may be encouraging it to grow. We would appreciate hearing from you as to whether you observe any correlations along this line in your own families. In the future, formal studies may prove or disprove this theory.

We are learning all the time! Please give us your feedback on these ideas, and send in ideas of your own.

Thanks to Dr. Rosita Arvigo, the late Adelle Davis, Dr. Gladys Glenn, Dr. James Lamiell, Cary Rothenburger, Dr. Gregory Shropshire, and Dr. Kuen Shi Tsay for their information and coaching on this topic.

1. Click here for the online Handbook, or directly to the Screening Guidelines.  One printed copy of the Handbook is distributed free to members.

2. Some excellent pamphlets on "Diet, Nutrition and Cancer Prevention" are available free by calling 1-800-4CANCER or 1-301-496-8664.

3. Frances Moore Lappé, Diet for a Small Planet, Ballantine Books, New York, 1971,1992.

4. See page 8 of this issue: Scientists Unraveling Why Vegetables Retard Cancer.

5. Patient Handbook, PKR Foundation, Kansas City.

6. You will find brewer's yeast in a health food store. Many of the richer vitamin supplement powders have a base of brewer's yeast.

7. Prevention, September 1993.

8. Matthew Longnecker, UCLA School of Public Health, editorial accompanying the study Marsha Reichman, Journal of the National Cancer Institute 85:692, 722, 1993.

9. If you are contemplating beginning a course of estrogen therapy -- birth control pills or hormone replacement -...Editor's update, July 2006: There is still no definitive recommendation for VHL women and hormone replacement therapy.

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.