It's a popular question. The family impression is that there are "caution points" around changes in hormone levels: adolescence, going on the pill, going off the pill, pregnancy, menopause, and even the "male menopause" where hormones change for men in the 40-50 age range. What people have noticed is that there seems to be a change in tumor activity around those times. Men should read this message too.

It's particularly hard to pin this down for women 18-35 because this is a time of tumor activity anyway, so what is attributable to these hormonal shifts, and what is not? We do see that women who have had little tumor activity for quite a while tend to have some renewal of activity around menopause.

There is no real data so far that would tend to agree or disagree with these impressions. There is interest at NIH in studying this, but no results to date. When they have tried to pin down information on pregnancy, many of the subjects who are willing to participate do not have sufficient documentation of their tumor status before the pregnancy to give us a real feel for how it changed.

For example, someone gets pregnant and has a tumor during or shortly after the pregnancy. But do we know whether that tumor was already there at the start of the pregnancy? Do we know what size it was? Did it perhaps grow only a very small amount during the pregnancy, but it was enough to make the symptoms clinically significant? Or did it pop out of nowhere because of the pregnancy? Unless we have good scans from before the pregnancy, we don't know what to think.

Similarly, there is not yet sufficient information about hormones and menopause.

Menopause is adult-onset ovarian failure with the loss of estrogens, progesterone, and ovarian androgens. Decline in ovarian function usually begins by age 35 to 40 years. This causes a permanent state of multiple hormone deficiencies.

The long-term goals of hormone replacement therapy (HRT) include relief of existing conditions such as hot flashes; vaginal dryness; emotional symptoms; prevention of osteoporosis; prevention of cardiovascular disease, dementia, and carbohydrate intolerance. From an endocrinology perspective, it seems only logical to use HRT.

The concerns about HRT stem from concerns expressed for breast cancer patients, as well as this family impression of concern around hormonal shifts. If going on/off the pill might trigger something, might going on/off HRT also trigger somethings? Or would HRT help you avoid the shift and therefore avoid the danger? What does the breast cancer research have to tell us? While early studies warned against HRT for breast cancer patients; more recent research is inconclusive. The bottom line is: we simply don't know. We have people in this VHL community who have chosen each path. It is important that you make a reasoned decision, based on tests and actual information about your own risks.

(1) choosing HRT. Dr. R. Neil Schimke, Chief of Endocrinology and Genetics at the University of Kansas Medical Center, feels strongly that the dangers of osteoporosis are greater than any dangers of renewed tumor activity. His 6 VHL patients who are on HRT do not seem to be experiencing any significant renewed tumor activity.

(2) choosing no HRT. People who do not have osteoporosis and have good bone density test results sometimes choose no HRT. Be sure to talk with your doctor if you make this choice to evaluate your own risk factors.

(3) herbal therapy. See Nutrition information below. There are a number of women in our community who are taking these herbal supplements and seem to be doing quite well. There are two predominant isoflavones found in soybeans, genistein and diadzein. There is a substance called genistein that has been shown to reduce the growth rate of vascular tumors of the eye (research done in Heidelberg) that is also used in herbal remedies for hot flashes. Genistein can also be found in the herb Red Clover. It is also said that genistein may help in the prevention of prostate cancer, as well as other cancers. To read more on genistein go to:

http://stratsoy.ag.uiuc.edu/~stratsoy/soyhealth/quantification.html. See also a related set of articles in the VHLFF from 1994.

Again, we have no significant confirming data to recommend for or against any of these paths. It's really up to you and your doctor to work out the right path for you. The most important thing is to continue your scans on a regular basis (at least every 2 years), even if you have had no significant problems for years. It's easy to get complacent if you haven't had any problems for ten years. But remember that some of the issues in VHL (e.g. kidney) are sneaky and have no symptoms until the problem has progressed quite far, and in some people kidney issues do not even begin until after ages 45-50, even though other people may experience these problems much earlier.

In the 1999 November/December issue of Endocrine Practice, the AACE Medical Guidelines for Clinical Practice for Management of Menopause provide recommendations for the clinical management of menopause and is intende for use by physicians to support their treatment of women's reproductive health issues.

Gale Lugo, Natural Health Consultant, suggests some reading that you may find interesting about HRT and menopause: What Your Doctor May Not Tell You About Menopause by John R. Lee, M.D.; and Hormone Heresy by Sherrill Sellman. This article was based on questions from vhlfa@egroups.com, with input from our advisers.

As printed in the VHL Family Forum 8:1, March 2000. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.