Learn the nuances of genetic testing to navigate the insurance obstacles and eliminate gaps in information.
Ovarian cancer can spread quickly, and is frequently overlooked until it advances to a more aggressive stage, as the symptoms are not always clear. If it is caught in a later stage, it is difficult to treat, and the survival rates decrease. Those are the hard facts that many women face. It’s brutal, and often unforgiving. But, that’s not where the story ends.
When a woman is diagnosed with ovarian cancer, it affects more than just her health. The long-term implications for the health of her children and grandchildren, both women and men, are equally as important to understand.
In a recent article in The Washington Post, a D.C. area radio personality, Chilli Amar of WASH-FM, shares her family’s experience, the loss of her mother and the choice she and her sister made to be tested for the genetic mutations that indicate a higher risk of developing ovarian cancer. Deciding what steps to take after learning the results is up to each patient. These genes are also an indicator of higher risk of developing breast cancer. Both cancers are affected by estrogen production. In Chilli’s case, she has decided to have preventative surgery and has consulted the minimally invasive GYN surgical specialists at The Center for Innovative GYN Care.
In most cases that means having a hysterectomy and an oopherectomy, removal of the uterus and the ovaries. Some may only choose to remove their ovaries.
Testing positive for any of the mutations can put an individual at higher risk for developing cancer, but the progression of genetic testing is important to provide a complete picture. Medical professionals can understand the entire story, and counsel you on the best approach to stay healthy if the progression of testing is followed appropriately. This means the children of the person who has cancer have to be tested first, before their own children can be tested.
Genetic testing is an important advancement in the prevention of disease. But how it works can be a mystery for many, and the insurance coverage a bit of a puzzle. This breakdown of the protocol, payment and most importantly the order of testing is essential for any woman who has had a close family member develop ovarian or breast cancer. Understanding this procedure can help many women navigate the healthcare system and ask the right questions of their doctors.
Scenario: A 65 year-old woman is diagnosed with stage 4 ovarian cancer. She has 2 daughters in their late 30s. One daughter has 2 girls and the other a little boy.
Years pass and the grandchildren become adults. After losing her grandmother so young, the oldest granddaughter who is now in her 20s decides she wants to be tested for the gene variants BRCA-1, BRCA-2 and PALB3 as a preventative measure. However, unless her mother has been tested, and the result was positive, the granddaughter will most likely have to pay for the test herself. This is very expensive, and while the results of that test will give her information about her own risks for developing the disease, it leaves a gap.
The dilemma here is that insurance will not pay for it unless her mother has been tested, and has positive results for the mutation, because she is not immediately connected to the family member who died from it. In order for many insurance companies to consider covering genetic testing, you must be a sibling or a child of the person with the disease. In most cases, if her mother’s insurance covers testing, and the mother is both willing to be tested and tests positive, only then will the granddaughter’s insurance* cover testing. It is also important for the mother to be tested before she is covered by Medicare. Medicare will only cover genetic testing once a person has already shown symptoms of a disease, and will not cover preventative screening.
*Insurance policies may change. This information is to guide through the hurdles that many women face in trying to be proactive in managing their health. Each insurance provider is different, and it’s critical for women who want to take preventative measures to know exactly what is covered.
These genetic mutations do not just affect women. Sons and grandsons of women who develop ovarian cancer can also be at risk if they also carry the genetic mutation. BRCA-1 and BRCA-2 also show increased risk for breast cancer in men.
Starting with the right person in the family is essential to creating a clear path of information. A woman who’s mother has died of ovarian cancer may or may not carry the gene. If she does not, there is no need for her children to be tested. With sisters, one may have the gene while the other may not.
If a mutation is detected in the mother, it is then usually possible for her children to be tested under insurance as well.
Because genetic testing is a recent advancement in disease prevention, one of the first steps is explaining the value and the protocol to different generations to eliminate frustration and unnecessary expense. Talk to your healthcare provider about the step-by-step process and learn more about what is covered by your insurance.
Losing a loved one to cancer is tremendously painful, and often we don’t consider our own health until we find ourselves sick. To prevent ovarian cancer from taking another member of your family, staying active and healthy are important factors, but knowledge is also very powerful. You can learn more about genetic testing, counseling and regulation at www.cancer.gov
Surgical specialists can often see patients sooner because they are focused entirely on surgery. Each patient gets detailed, in depth attention from Dr. Danilyants and Dr. MacKoul. This personalized care helps patients understand their condition and the recommended treatment so that they can have confidence from the very start. Our surgeons have performed over 20,000 GYN procedures and are constantly finding better ways to improve outcomes for patients.
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