October is well-known as breast cancer awareness month. Everything is drowned in a deluge of pink from bagels to bandanas to billboards. While breast cancer awareness is very important—at least 12% of American women will be diagnosed with breast cancer in their lifetime—it can feel that this ocean of pink overshadows awareness for other serious cancers. Therefore, we would like to highlight September as Ovarian Cancer Awareness Month and we hope to inspire you to drench everything in teal this month in support.
In the United States, ovarian cancer accounts for approximately 3% of all cancers affecting women. The most common type of ovarian cancer is epithelial ovarian cancer which occurs in the tissue layer that covers the ovaries. The symptoms of any type of ovarian cancer can be non-specific. Some symptoms are similar to those women experience during menstruation or menopause. Women with ovarian cancer may feel bloated, may develop indigestion or heartburn, may experience pelvic or abdominal pain, and/or urinary frequency. If these symptoms are new and frequent, your doctor may suspect ovarian cancer. Unfortunately, ovarian cancer may not cause any of these symptoms until the tumor has grown quite large or has spread (metastasized).
Recent research in the past 5 – 10 years has demonstrated that between 15% – 20% of women affected with ovarian cancer have a mutation (gene change) in a gene associated with an inherited cancer predisposition syndrome. The most commonly recognized genes associated with a cancer predisposition syndrome are BRCA1 and BRCA2. People that have a mutation in any gene associated with an inherited cancer predisposition syndrome have a significantly increased risk to develop certain cancers during their lifetime. In comparison, only 5% – 10% of women affected with breast cancer ultimately are found to have a mutation in a gene associated with an inherited cancer predisposition syndrome.
Based on this research, the National Comprehensive Cancer Network (NCCN) currently recommends genetic counseling with the option of genetic testing for all women diagnosed with ovarian cancer, regardless of their age at diagnosis. A genetic counselor is a health professional with special training to help people decide if genetic testing for hereditary ovarian cancer is right for them (or their families). Genetic counselors are specifically trained to help people understand changes to their genes that can result in disease, how these changes affect their health, and how these changes may impact the health of their family members.
Regrettably, although the guidelines presented by the NCCN were created to assist in providing the best medical care for women with ovarian cancer, insurance payers are still the gatekeepers that decide who has access to this life-saving testing. For many payers, explicit criteria must be met before genetic testing will be covered. These criteria can vary widely between payers, creating unbalanced access to genetic testing services. Studies have shown that these inconsistent criteria lead to a significant number of undiagnosed at-risk individuals. One study found that when patients who met their insurance’s criteria testing were compared to patients who did not meet their insurance’s criteria for testing, the risk to have a disease-causing mutation was the same. Although they did not meet their insurance’s explicit criteria for testing, approximately 16% of individuals denied coverage were ultimately found to have a mutation in a gene known to cause a hereditary cancer syndrome, such as BRCA2.
Therefore, if you have concern that you or a loved one is affected with ovarian cancer, please see a specialist, such as a medical oncologist. If you have had ovarian cancer and desire genetic counseling, please contact Advanced Tele-Genetic Counseling for telemedicine services or go to nsgc.org to find a genetic counselor near you. If you have had ovarian cancer and have been denied coverage for your desired genetic testing, please contact a genetic counselor or other cancer specialist to determine if there are financial assistance options available. And, of course, do not forget your teal.