The BRCA1/BRCA2 test is a genetic mutation marker tests that indicates risk for breast and ovarian cancer. The tests were in the public eye earlier this year, when Angelina Jolie had a double mastectomy after testing positive for the mutations. Someone like Jolie has nearly unlimited financial resources, but this is obviously not the case for the average person.
Cancer.gov’s helpful BRCA1/BRCA2 FAQ clearly indicates that coverage for testing varies by insurance company and can cost as little as hundred and as much as thousands of dollars. The financial challenges the test presents, as overwhelming as they may seem, are just the tip of the iceberg. If you are lucky enough to afford the genetic testing, you also need to go to genetic counseling, which also may or may not be covered by your insurance.
A BRCA1 mutation marker indicates a nearly 65% chance of developing breast cancer and 39% chance of developing ovarian cancer. A BRCA2 mutation indicates a 45% risk of developing breast cancer, and an 11% risk of developing ovarian cancer. With such a high risk, many women opt for prophylactic surgery, which includes a double mastectomy as prevention for breast cancer and the removal of both ovaries and fallopian tubes as prevention for ovarian cancer. The decision to have prophylactic surgery is life-altering.
Women who elect to have one or both surgeries will endure a long recovery period of reconstructive surgery and hormone therapy, which once again, may or may not be covered by insurance. It sickens me that at such a traumatic moment in a woman’s life, she is essentially penalized for being proactive and seeking preventative care with an utter lack of financial support. Depending on her personal situation, she may also not have emotional support, and the cost of more genetic counseling or therapy may also be too costly.
I was one of my mother’s primary caretakers in the last months, weeks, days, and hours of her life. I was the only person who could get her to stop clenching her teeth long enough to give her a drop of morphine after the metastatic brain tumor inhibited her speech. I went to bed every night to the sound of the oxygen machine that helped her breathe despite the two huge metastasized lung tumors, praying so hard to a god that I didn’t believe in that I’d wake up to her smiling face dancing in the living room – completely cured.
Instead, nearly five years ago, I held the death certificate in one hand citing “metastatic breast cancer” as the cause of death while peeling the “do not resuscitate” signs off of the front door and refrigerator.
It’s October, which means that it is breast cancer awareness month. Some of us are all too aware of breast cancer, of cancer in general, and its devastating effects. Instead of wearing a bunch of pink, please get mad for people like me – people who lost someone near and dear to them and who still have a second traumatic experience to look forward to that often includes a hefty financial and emotional toll.
Though I’m not ready quite yet, I will have the BRCA1 and BRCA2 test in my early 30s. What I will do with the results weighs on me heavily. I am quite sure I would elect to have prophylactic surgery so that my family may not have to re-live my experiences. I am waiting because I am not ready to make those decisions. I’m sharing my story because after five years, I am finally ready to do so.
This is the one thing my mother gave me that I do not cherish.
Please give some serious thought to BRCA1/BRCA2 testing if you have a history of breast or ovarian cancer in your family. Research your insurance company, and please send an angry letter if you find that they do not cover testing, counseling, or reconstruction. It will have a much greater impact than wearing pink.