Decision Making Around Cancer Risk
- Tiffany Seely lost her mother to ovarian cancer then underwent genetic testing that revealed she had a BRCA gene mutation, like her mother, that would increase her risk of ovarian and breast cancer. Seely decided to have a prophylactic [preventative] double mastectomy and oophorectomy (ovary removal surgery) to minimize her cancer risk.
- According to experts, about 10 percent of patients who undergo genetic testing will test positive for the BRCA1 or BRCA2 gene, but an additional 5 to 6 percent will test positive for other genes that can significantly impact your risk for other breast and ovarian cancer as well as other cancers.
- Genetic testing is something to consider if you have a strong family history of certain cancers, and it’s important to discuss options with your doctor.
- Preventative surgeries can take an emotional and physical toll and they aren’t for everyone. Still, you should consult your doctor about cancer-risk minimizing efforts if a genetic mutation puts you at a higher risk for disease.
- Insurance does not always pay for elective procedures to prevent cancer.
“I think my whole life, I’ve done everything to make her proud of me, even though she’s not here on earth with us,” Seely said in an interview with Parade. “But I know she’s with me, and her light shines through me constantly.”Read More
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Dr. Julie Rani Nangia, an assistant professor at Baylor College of Medicine, tells SurvivorNet about 10 percent of patients who undergo genetic testing will test positive for the BRCA1 or BRCA2 gene, but an additional 5 to 6 percent will test positive for other genes that can significantly impact your risk for other breast and ovarian cancer as well as other cancers.
In an interview with Parade, she opened up about her unique connection to cancer and explained why she underwent a prophylactic [preventative] double mastectomy and oophorectomy (ovary removal surgery) to minimize her risk for developing breast and ovarian cancer.
“My life has always been about survival,” she said. “My mother died of ovarian cancer, which happened to have come from a genetic pattern called the BRCA gene. And I was one of the youngest people in the U.S. to have a prophylactic double mastectomy and oophorectomy, meaning that I chose preemptively to take everything off and out so that I wouldn’t die at the same age as my mom.”
And sure enough, doctors found DCIS, ductal carcinoma in situ – a non-invasive or pre-invasive type of breast cancer – prior to her mastectomy. Needless to say, she’s grateful that she acted when she did.
“Had I waited until the recommended age they wanted me to start monitoring for breast cancer, I probably would not be sitting here right now,” she said.
Seely says her genetic mutation was a “gift.” A gift that gave her the option to be one step ahead of cancer – something she thinks will translate into her Survivor game play.
“[The BRCA mutation] empowered me to do something proactively instead of reactively, which I also think is something that’s gonna help me in this game, to be proactive and not reactive. See things coming instead of reacting to something that is happening,” she said. “So I took my life into my hands, and thank God I did. My dream was to live past the age of my mother, and I have surpassed her age. I’m what they really call, if you look me up, as a “previvor” because I didn’t have to survive cancer. I “previved” it. So it’s time to be a survivor!”
Understanding Genetic Testing
The most common gene mutations are the BRCA1 (BReast CAncer gene 1) and BRCA2 (BReast CAncer gene 2) mutations. It’s important to note that if a parent carries a BRCA gene mutation, there’s a 50-50 chance you could be carrying it too.
Dr. Ophira Ginsburg, director of the high-risk cancer program at NYU Langone’s Perlmutter Cancer Center, says genetic testing is a good way to fully understand your cancer risk, but its not necessarily needed for everyone.
“Nowadays, you can even self-refer and ask for testing,” she previously told SurvivorNet. “But we encourage only those who have a family history to really get that kind of service if you need it.”
She recommends that people who have family members that were diagnosed with a very rare cancer or have “a strong family history of one or two kinds of cancer, particularly breast and ovarian, but also colon, rectal, uterine, and ovarian cancer” you could benefit from genetic testing. She also said that if you have relative who were diagnosed at an early age, genetic testing could be a good option.
If you do have this family history, Dr. Ginsburg says to inquire about your cancer center’s hereditary cancer program and/or finding a genetic counselor through the National Society of Genetic Counselors (NSGC ) to talk about what kind of genetic testing is right for you.
Genetic testing can be used in cases like Tiffany Seely’s for preventative measures, but it can also be very helpful in navigating treatment options after a cancer diagnosis. With ovarian cancer, for example, BRCA 1, BRCA 2, PALB2, ATM gene mutations can point doctors toward PARP inhibitors which work by preventing cancer cells from repairing their own damaged DNA.
“Certain individuals with ovarian cancer, if they proceed with genetic testing and they test positive in specific genes, they might benefit the most from having PARP inhibitor medicine prescribed for them as treatment for their ovarian cancer,” says Lauren Mills, a genetic counselor at UT Health San Antonio, adding that women who test negative for mutations in these specific genes may also benefit from PARP inhibitors.
Overall, genetic testing can be a great way to better understand your risk of developing certain cancers as well as best potential treatment options if you’ve been diagnosed with a certain cancer. If you’re worried about your cancer risk, it’s important to speak with your doctor and decide if genetic testing is right for you. Dr. Ginsberg added that cost shouldn’t be an issue since most people with a strong family history can have the genetic testing mostly covered by their insurance. She even said Medicaid and cancer programs themselves also covers genetic testing in certain situations.
But according to Dr. Ophira Ginsburg, Director of the High-Risk Cancer Program at NYU’s Perlmutter Cancer Center, these tests will not give you the in-depth genetic analysis needed to fully understand your cancer risk.
“Many of the other CLIA-certified, meaning the commercial laboratories that we use at our cancer program, and others like ours throughout the country, will sometimes be able to eat the cost of the test, as well, if you have unique circumstances,” she explained.
Considerations for Preventative Surgeries
One thing to keep in mind when it comes to preventative surgeries like mastectomies and oophorectomies (ovary removal surgeries) is that these surgeries also have risks of their own and may not be the right choice for everyone.
For someone like Mandy Ginsberg, the former CEO of the Match Group (Match.com, Plenty of Fish, Tinder, etc.), a prophylactic mastectomy and an oophorectomy was the right choice after testing positive for a BRCA mutation. But the surgeries took an emotional toll. She says finding the support you need is important to think about if you undergo these preventative measures.
“I was going in for my surgery to do an oophorectomy … which is pretty significant, because testosterone leaves your body,” Ginsberg previously told SurvivorNet. “I remember talking to the doctor at the time who was going to do the surgery, and I said, ‘So, when do I go through menopause?’ He was like, ‘I don’t know … the next few days?’ And I was like, ‘What?!’ I do always remember that when I had these discussions — I know there’s a lot of amazing male doctors out there — but they have not been in our shoes as women.”
It is not yet known who will benefit from breast removal when it comes to these moderately risky gene mutations. That being said, it’s important for doctors to help patients understand what their individual cancer risks may be based on specific mutations and other factors.
Barbara Dehn, a nurse practitioner at El Camino Women’s Medical Group, says that conversations with your doctor are key.
“What we know is when a woman has a genetic mutation that puts her at higher risk for developing ovarian or breast cancer, she has a lot of choices,” Dehn previously explained for SurvivorNet. “She does not have to automatically go to surgery… She might decide to freeze her eggs. She might decide that she’ll have surgery after 35 and after maybe having one or two pregnancies and breastfeeding her babies. She might decide to wait until she’s 40. There’s no one right way to go about this if you’ve been diagnosed with a BRCA1 or 2 mutation.”
Another consideration when it comes to preventative surgeries may be cost since insurance companies vary in terms of whether or not they’ll pay for them. According to the National Cancer Institute, many health insurance companies provide policies regarding coverage for prophylactic mastectomy (bilateral or contralateral) and bilateral prophylactic salpingo-oophorectomy for breast and ovarian cancer risk reduction.
“However, the criteria used for considering these procedures as medically necessary may vary among insurance companies,” the NCI website states. “Some insurance companies may require a second opinion or a letter of medical necessity from the health care provider before they will approve coverage of any surgical procedure. A woman who is considering prophylactic surgery to reduce her risk of breast and/or ovarian cancer should discuss insurance coverage issues with her doctor and insurance company before choosing to have the surgery.”