What women can do about ovarian cancer risk

Guest post by Sue Friedman, DVM, Rebecca Sutphen, MD, and Kathy Steligo

After soliciting input from health care experts and the public, the United States Preventive Services Task Force (USPSTF) recently reissued guidelines on ovarian cancer screening for women who are at average risk for the disease.

According to the USPSTF, “No new evidence was found on the benefits of screening for ovarian cancer. New evidence on the combination of ultrasonography and cancer antigen-125 blood tests for screening suggests that abnormal test results may result in surgery for a substantial proportion of women who do not have cancer.” Based on these findings, the USPSTF recommends, “…against screening for ovarian cancer in women. This recommendation applies to asymptomatic women. Women with known genetic mutations that increase their risk for ovarian cancer (for example, BRCA mutations) are not included in this recommendation.”

Ovarian cancer is a life-threatening disease that is typically diagnosed at advanced stages. Given this update, it would be easy to conclude that nothing can be done about it, but that is not the case. Unfortunately, many media reports of the USPSTF’s recommendation omitted this key piece of the new guidelines: “Women with an increased-risk family history should be considered for genetic counseling to further evaluate their potential risks.”

It is true that current screening methods are less than effective for women who are at average risk, and can lead to false positives and unnecessary worry, surgeries, and harm. Early detection is the subject of ongoing research and an area that we have much to learn about. We do, however, know quite a bit about assessing a woman’s risk for ovarian cancer, and we have strategies to manage risk and lower mortality that are most effective in women who are at very high risk, including women with:

  • One or more relatives with ovarian, colon, uterine, pancreatic, or young-onset breast cancer
  • Certain gene changes (mutations) called BRCA1 and BRCA2, which are associated with Hereditary Breast and Ovarian Cancer Syndrome
  • Certain gene mutations that cause Lynch Syndrome, which is associated with colon, uterine, and ovarian cancer

For women who may fall into the high-risk category, genetic counseling (consultation with a genetics expert) is critical. The process can provide people with an individualized risk assessment for developing disease based on personal and family medical history, determination of which genetic tests might be appropriate and who is the best person in the family to undergo testing first, genetic test results, and other factors that personally impact risk. In women who have already been diagnosed with ovarian cancer, 14% to 20% will carry one of the inherited mutations above. For this reason, every woman who is diagnosed with ovarian cancer meets expert guidelines for referral to a genetics expert.

Women who fall into the high-risk category for ovarian cancer have different screening and risk-management options than women in the general population. Experts can explain the benefits and limitations of each option, which include the following:

  • Ovarian screening with CA-125 blood tests and transvaginal ultrasounds. Although neither sensitive nor highly accurate, these procedures offer benefits for high-risk women that may outweigh the risk.
  • Oral contraceptives can significantly lower the risk for ovarian cancer for all women, regardless of their risk status.
  • Removing the ovaries and fallopian tubes greatly reduces (but does not eliminate) ovarian cancer risk. This procedure has been shown to improve survival in women who carry an inherited mutation.

Although the benefits of screening for asymptomatic average-risk women do not outweigh the risks, women who fall into this category should be aware of any changes in their health that might be signs of ovarian cancer. These symptoms include:

  • bloating
  • pelvic or abdominal pain
  • difficulty eating or feeling full quickly
  • urinary symptoms (urgency or frequency)

Women who have these symptoms almost daily for more than a few weeks should see their doctor, preferably a gynecologist.

Risk assessment and management for hereditary ovarian cancer is covered in great detail in our book Confronting Hereditary Breast and Ovarian Cancer and on the FORCE website.

Genetic counseling is covered as a preventive service under the Affordable Care Act. To find a genetics specialist by phone, contact InformedDNA. To find a genetics specialist in your local area by zip code search, visit http://www.nsgc.org.

Sue Friedman, D.V.M., is the founder and executive director of Facing Our Risk of Cancer Empowered. Her numerous articles on hereditary cancer have appeared in Oncology TimesCUREGene Watch, and the Boston Globe, among others. Rebecca Sutphen, M.D., is a nationally recognized clinical and research expert in hereditary cancer, professor of genetics at the University of South Florida, and chief medical officer of Informed Medical Decisions. Kathy Steligo is a freelance writer specializing in business and health topics and author of The Breast Reconstruction Guidebook, the third edition of which will be out in October.

The information provided in this blog post is not meant to substitute for medical advice or care provided by a physician, and testing and treatment should not be based solely on its contents. Instead, treatment must be developed in a dialogue between the individual and his or her physician. This post has been written to help with that dialogue. The services of a competent medical professional should be obtained whenever medical advice is needed.

3 Comments

Filed under Cancer, Consumer Health, Genetics, Health and Medicine, Public Health, Women's Health

3 responses to “What women can do about ovarian cancer risk

  1. Sue is one of the strongest advocates in the United States for the hereditary cancers which primarily affect women. We are so very pleased to see her mention the hereditary cancers of Lynch syndrome which also present as endometrial cancer and ovarian cancer, as well as subsets of breast cancer. It is essential one knows their family histories of cancer as in women with Lynch syndrome, the sentinel cancers of Lynch syndrome are most usually endometrial and ovarian cancers.

    Thanks to Sue and her tireless advocacy efforts, September 26, 2012 is National Previvor Day…our children and future generations may never have a cancer as a result of the public awareness and we are truly grateful to her for that so families will no longer look like this: http://www.youtube.com/watch?v=CnatsiNpjz4

    Thank you, Sue for all you do.

    Linda Bruzzone
    Founder/Executive Director
    Lynch Syndrome International

  2. Donna

    If you’ve tested positive for the BRCA mutation, is it possible to have other mutations like the one associated with Lynch Syndrome? Could nature be that cruel?

    • Hi Donna,
      Yes, it is unfortunately possible to inherit more than one mutation that predisposes people to disease. So it is possible to have both a BRCA mutation and a mutation that causes Lynch Syndrome. The very best way to determine if you or someone in your family has a mutation is to see a genetics experts such as a genetic counselor. You can talk with a genetic counselor through our FORCE toll-free helpline by calling: 866-288-7475 ext. 704 or visiting the website for the National Society of Genetic Counselors or contacting Informed Medical Decisions.

      Warm regards,
      Sue