FORCE has a strong commitment to promoting research to benefit our community. We advocate for more research funding, educate people about available studies, and report findings back to our community.
by Lisa Rezende, PhD
To reduce their risk of developing ovarian cancer, experts recommend that women with BRCA mutations remove their ovaries and fallopian tubes (also known as risk-reducing salpingo-oophorectomy or RRSO) once they are done having children, and ideally between age 35-40. Some gynecologic experts also recommend removal of the uterus (hysterectomy) at the same time, but not all experts agree this is necessary. One concern is whether BRCA may increase the risk for uterine cancer. Previous studies produced mixed results: some research has shown small increases in uterine cancer risk while other studies have not.1-3 and national guidelines for women with BRCA mutations do not include recommendations for hysterectomy. Using tamoxifen has been shown to increase uterine cancer risk, and has been suggested to be responsible for at least some of the uterine cancer risk that has been reported in BRCA mutation carriers.4
Many women come to FORCE asking if they should have their uterus removed during RRSO. Understanding the benefits and risks to hysterectomy, is critical to help women make this difficult decision.
A study by Dr. Noah Kauff and colleagues at Memorial Sloan Kettering Cancer Center provides new data of a link between BRCA1 mutations and rare forms of uterine cancer.5 Presented at the Society of Gynecologic Oncology National Meeting this past March, the study followed 525 BRCA mutation carriers who had their ovaries and fallopian tubes surgically removed, but kept the uterus intact. During the follow-up period of 0.1-16.9 years (with a median of 5.8 years), 4 women—all of whom had BRCA1 mutations—were diagnosed with aggressive uterine cancer; two of the women had used tamoxifen, while two others had not. Despite the small numbers, this increase in uterine cancer risk was statistically significant. Still, it is important to note that these aggressive forms of uterine cancer are relatively rare and the researchers estimate the 10-year risk of these forms of uterine cancer in BRCA1 mutation carriers is about 2%. Larger research studies will need to confirm these findings before experts change national guidelines to recommend hysterectomy for BRCA1 carriers. BRCA2 carriers are not considered to be at increased risk for uterine cancer, but like all women, they may be at higher risk if they have taken tamoxifen or are on hormone replacement that doesn’t include progesterone.
Many women with BRCA1 mutations who have not removed their uterus may wonder if they should take additional steps to manage their risk for uterine cancer. Currently, there are no national guidelines for follow-up care of women who have undergone RRSO without hysterectomy. Members of our advisory board recommend continuing annual pelvic exam, having Pap smears as recommended by their healthcare providers, and knowing the signs and symptoms of uterine cancer. Any signs of unexpected bleeding or spotting should be reported to your gynecologist or gynecological oncologist.
If you are deciding whether or not to remove your uterus as well as your ovaries and fallopian tubes, you should discuss the choice with your health care providers. Other factors to consider include your age, whether or not you use or have used tamoxifen, personal history of any uterine or cervical abnormal symptoms or findings, and whether or not you plan on using hormone replacement therapy to manage symptoms of surgical menopause.
Please take this quick survey (it takes about 10 minutes). and share your thoughts on this research for the greater good! You will instantly be able to see how your responses compare with others. This survey is a tool of the ABOUT Network led by FORCE. The goals of the ABOUT Network are to collect and measure real-life experiences, questions, decisions, and health outcomes of people like you who are concerned about or living with a cancer-causing mutation or hereditary cancer risk.
1 Levine, D.A., Boyd, J., et al. “Risk of Endometrial Carcinoma Associated with BRCA Mutation.” Gynecologic Oncology, Vol. 80, No. 3, p. 393-98, March 2001.
2 Lavie, O., Gemer, O, et al. "BRCA Germline Mutations in Women with Uterine Serous Carcinoma—Still a Debate." International Journal of Gynecological Cancer Vol. 20, No. 9, p. 1531-34, December 2010.
3 Pennington, K.P., Swisher, E.M., et al. "BRCA1, TP53, and CHEK2 Germline Mutations in Uterine Serous Carcinoma." Cancer, Vol. 119, No. 2, p. 332-38, January 2013.
4 Beiner, M.E., Narod, S.A., et al. "The Risk of Endometrial Cancer in Women with BRCA1 and BRCA2 mutations. A Prospective Study," Gynecologic Oncology, Vol. 104, No. 1, p. 7-10, January 2007.
5 Shu, CA, Kauff, N.D., et al. "Risk of Developing Uterine Corpus Cancer (Ut Ca) Following Risk-Reducing Salpingo-Oophorectomy (RRSO) in Women with BRCA Mutations." Abstract #LBA-5 Presented at Society of Gynecologic Oncology Annual Meeting on Women’s Cancer. March 22-24, 2014.