by Lisa Rezende and Alexandria Groves
Over 20,000 women in the United States are diagnosed with ovarian cancer each year. Women with mutations in BRCA1, BRCA2, and the genes associated with Lynch syndrome are at a much greater lifetime risk of ovarian cancer compared to women in the average population. Recent studies show that women with mutations in BRIP1, RAD51C, RAD51D, and possibly other genes are also at increased risk. FORCE has advocated for increased research into ovarian cancer screening, treatment, and prevention for many years.
A report published earlier this year by the Institute of Medicine (IOM) of the National Academies of Sciences, Engineering, and Medicine presents models of the ovarian cancer journey from previvorship, through treatment, survivorship, and long-term survivorship. The report identifies gaps in current research efforts and makes recommendations on critical areas for more research. (FORCE XRAYS looked at the report and media coverage about it earlier this year.) Here we outline the key recommendations and what they mean for the hereditary breast and ovarian cancer community.
Basic Biology: Better understanding of ovarian cancer
Developing effective treatment and prevention strategies requires a clear understanding of the basic biology of the disease. Because we have known about ovarian cancer for many years, you might think this is well understood, but many questions are still unanswered.
For example, not all ovarian cancers are the same. There are multiple subtypes of ovarian cancer, including serous, endometrioid, clear cell, mucinous, and germ cell. Women with BRCA mutations are more likely to develop the serous subtype of ovarian cancer, while women with Lynch syndrome are at risk of developing a number of different subtypes. Because ovarian cancer is a relatively rare disease in the general population, a lack of understanding of many of the subtypes exists. To address this gap, the IOM report recommends:
- A better understanding of the different ovarian cancer subtypes.
- A standardized consensus on the characteristics of each subtype.
Previvorship: Efforts towards risk assessment, screening, and early detection
The hereditary breast and ovarian cancer community is well aware of the need for effective risk assessment, screening, and early detection for ovarian cancer. Currently no methods of screening exist that reliably detect ovarian cancer at an early stage. The standard of care for BRCA1 and BRCA2 mutation carriers is risk-reducing salpingo oophorectomy (RRSO)—removal of the ovaries and fallopian tubes, between ages 35-40 or upon completion of childbearing. National guidelines also recommend RRSO for women with mutations in BRIP1, RAD51C, or RAD51D.
Risk-reducing surgery has been shown to extend the lifespan of BRCA mutation carriers. Identification of women who are BRCA1/2 mutation carriers remains a crucial part of preventing ovarian cancer. However, removal of the ovaries before the age of natural menopause often carries with it a number of short-term and long-term side effects. This underscores the need for better ovarian cancer screening and effective non-surgical methods of prevention. To this end, the committee recommends increased research, including:
- development of new ways to increase genetic counseling and testing for BRCA and other mutations that increase ovarian cancer risk.
- risk factors for ovarian cancer beyond known inherited mutations.
- assessment of the risk versus benefit of nonsurgical and surgical prevention strategies for different ovarian cancer subtypes and populations.
- focus on (and increased funding for) developing methods to detect ovarian cancer at an earlier, more treatable stage.
Women with ovarian cancer: Diagnosis and treatment
Today, when ovarian cancer is diagnosed, it is more accurately and consistently staged than in the past. However, few options are available for drug therapies, and the majority of the available drugs have a high resistance rate. Also, although the national clinical guidelines have resulted in better outcomes for patients, many women who suffer from ovarian cancer are not receiving standard of care treatments, such as access to the correct specialists, surgical management, chemotherapy, and access to genetic counseling and testing. The IOM report suggests the following to address these gaps:
- Researchers and health care providers should determine how to ensure that current standards of ovarian cancer patient care are consistently implemented.
- Current treatment strategies should be improved.
- More effective therapies and more targeted, specific combination therapies should be developed.
Ovarian cancer survivorship: Supportive care along the survivorship trajectory
Most research regarding ovarian cancer focuses more on treating the disease, rather than the improvement of managing the acute and long-term effects of the diagnosis and treatment the patient experiences. The research that is currently available provides little insight on these effects. The report also recommends:
- focus on research that studies the needs of ovarian cancer patients from diagnosis through survivorship.
Spreading the word: Dissemination and implementation of knowledge:
While research and knowledge of ovarian cancer is definitely progressing, not all involved groups (patients, families, health care providers, industry, advocacy groups) receive new and important information. For this gap, the IOM recommends:
- cooperation between researchers, health care providers, and advocacy groups to develop a reliable system that disseminates information to patients and their families.
FORCE applauds the release of this report and will continue advocating for research in these vital areas so that women with ovarian cancer and those at high risk for ovarian cancer will have better options in the future. We continue advocating for research that will uncover better ovarian cancer screening and treatment, as well as studies that will improve the quality of life of ovarian cancer survivors and women at high risk for ovarian cancer.
If you have ovarian cancer or you are at increased risk for ovarian cancer, FORCE is here for you! We have several programs that serve ovarian cancer patients and women at high risk for ovarian cancer due to an inherited genetic mutation, including:
- Know More
If you have been diagnosed with ovarian cancer, you meet national guidelines for genetic testing to see if your cancer was caused by an inherited mutation. Let FORCE help you Know More.
- Peer Navigation
Our new Peer Navigation Program provides one-on-one support for people facing hereditary breast, ovarian, and related cancers. Peer navigators are available to help women facing ovarian cancer diagnosis, women considering genetic testing to see if they carry a mutation in BRCA or other gene that increases ovarian cancer risk, and women at high risk for ovarian cancer who are considering their options for managing risk.
- 2016 Joining FORCEs Conference
Our 2016 Joining FORCEs conference includes many sessions for ovarian cancer survivors and women at high risk for ovarian cancer, including: Ovarian Cancer Treatment, and Ovarian Cancer Risk Management. You will also meet other people affected by hereditary breast and ovarian cancer, and learn more about participating in research that will lead to better options for hereditary cancer community.
National Academies of Sciences, Engineering, and Medicine. Ovarian Cancers: Evolving Paradigms in Research and Care. Washington, DC: The National Academies Press, 2016.