by Lisa Rezende, PhD
The ABOUT Patient-Powered Research Network conducts research to provide people facing hereditary breast, ovarian, and related cancers with the information they need to make informed medical decisions. To better understand how women make decisions about management of surgical menopause, we conducted a survey on the use of hormone replacement after risk-reducing salpingo-oophorectomy (RRSO) to remove the ovaries and tubes. This article includes some of the results from this survey.
In our survey, over 500 women who had risk-reducing removal of their ovaries and fallopian tubes answered questions about the menopause symptoms they experienced and how they manage those symptoms. This is a common question in our community, as national guidelines recommend that women with BRCA mutations have their ovaries and fallopian tubes removed around age 35 to 40 or after the completion of childbearing. RRSO reduces cancer risk, but also puts women into surgical menopause. Currently, no national guidelines exist on menopause management specifically for women with hereditary cancer risk.
We asked women if they had any of the symptoms known to be associated with menopause and whether the symptom(s) got worse, better, or did not change after removal of their ovaries. The most common symptoms that reportedly got worse after surgery included:
As we discuss in our first report, the use of hormones after RRSO varies widely, with 40% of respondents currently taking hormones, 13% having taken them in the past, and 47% never having taken hormones. The type and form of hormones used also varies. Just over half of the women (52%) on hormones take estrogen alone, with a smaller number (29%) taking estrogen with progesterone. These numbers generally reflect whether or not a woman had a hysterectomy; women with an intact uterus are recommended to take progesterone along with estrogen to protect against uterine cancer. A much smaller percentage of women take testosterone: either along with estrogen alone (5%) or along with estrogen plus progesterone (17%), but none reported taking testosterone alone.
type of hormone used
An equal number of women (40%) reported taking hormones in pill form as those who use a hormone patch (40%); fewer women use hormone creams (22%), vagifem tablets (10%), vaginal rings (7 %) or intrauterine devices (IUD, 4%).
type of hormone preparation
Women who discontinued hormone therapy reported some changes in menopausal symptoms when they stopped taking hormones. A majority of women reported a worsening of vaginal dryness (56%) and decreased libido (54%). Many women also reported worsening of hot flashes (43%), weight gain (42%), memory issues (40%) and sleep issues (38%). While some symptoms became worse, most women reported no change in depression (56%), anxiety (52%), or incontinence (50%).
Despite the large number of women who report menopausal symptoms, many of those who do not take HRT do not take other medications or supplements to treat these symptoms. Of the women who took nonhormonal treatment for symptoms, most were doing so to treat:
In the comments, respondents noted a wide variety of medications and supplements that they used to treat these symptoms; many women reported trying more than one treatment.
This engagement survey from the ABOUT network shows us the range of symptoms and medical decisions faced by women in surgical menopause from risk reducing removal of the ovaries and tubes. These women look to both hormonal and nonhormonal options for treatment. The symptoms reported reflect what many women facing hereditary breast and ovarian cancer know through talking to others, and are in line with data reported from Dr. Susan Domchek’s study of long-term consequences of menopause (see video of her presentation at the 2014 Joining FORCEs conference and our report of her presentation at the 2014 ASCO national meeting). Our survey results on decision making around menopause management show how much variety there is in treatments of menopausal symptoms among women who are at high risk for breast and ovarian cancer, and point to a need for research into the best practices for menopause symptom management to guide informed medical decision-making. These results will help our research team design studies to help women with HBOC make informed medical decisions to improve their health outcomes.
posted September 20, 2015