If you’re a young person considering genetic testing, someone you know may have already tried to talk you out of it. Maybe you’ve read through countless blog & Reddit posts in which many relatively older BRCA+ women comment a similar sentiment: “I was devastated by my results at my age – I can’t imagine dealing with this so young!” Maybe you’ve been frightened by stories of other people in their young twenties getting their breasts preventatively removed, and while you respect their decisions, are positively shared shitless by that being presented to you as your next step.
It’s currently recommended that children under the age of 18 should not be tested for BRCA mutations because their medical care would not be affected at that age even in the face of their much-higher-than-typical cancer risks. By your twenties, however, there are steps you can and should take. At 23, I am already enrolled in a high-risk management screening program. Generally, clinical and self-breast exams should begin at 18. Imaging should begin biannually at age 25.
Getting tested is a highly personal choice, and I am not here to try to push anyone into getting tested. What I can do, however, is address some of the questions that I had as I faced this process. I can also say that before I got tested, living in the not-knowing was an almost constant source of unrest. As soon as I got my results, even though they were positive (spoiler alert), I felt relieved.
Q: Will I have trouble getting insurance if my results are positive?
A: For the most part, not really. Under the Genetic Information Nondiscrimination Act of 2008 (GINA), it is illegal for health insurance providers and employers to discriminate against people based on genetic information. GINA does not, however, apply to life insurance or disability insurance. So while positive results won’t affect your ability to get health insurance, they have the potential to affect your chances of getting life & disability insurance. My genetic counselor told me that out of the hundreds of people she had counseled, only a couple, maybe a handful, had any issue with life or disability insurance. According to Susan G. Komen, “there have been no court cases of genetic discrimination regarding theBRCA1/2 gene mutations since these tests have been used.”
What I would urge you to consider, though, is the rarely discussed positive effects on your insurance if your genetic test results are positive. If you’re thinking about BRCA testing, you almost undoubtedly have a strong family history and are already concerned about your cancer risk. But no insurance company is going to cover annual MRIs for a 25-year-old without documented increased risk. This was the message relayed to me by both my first breast surgeon and genetic counselor, and what was the ultimate tipping point for me to decide to bite the bullet (actually, the cotton swab) and get tested.
Q: If I’m positive, will doctors push me to have preventative surgeries?
A: Not if you have good doctors. It is solidly recommended to have your ovaries removed at age 40 or when child-bearing is complete (you can push it to age 45 if you’re BRCA2+ and have already had a prophylactic mastectomy). This is because ovarian cancer is scary as fuck and there is not an effective screening method for it yet. It also has the added benefit of reducing your breast cancer risk. Right now, however, because screening for breast cancer is pretty effective, it is considered medically acceptable to either do enhanced screening or have a prophylactic mastectomy or/and do chemoprevention with certain drugs. As my genetic counselor told me, no doctor should try to pressure you into getting a prophylactic mastectomy or try to convince you that that is the only “right” choice, almost especially if you are as young as me. The right choice is different for everyone. Right now, the right choice for me is screenings, and every doctor I have seen agrees.
This is not say that you won’t receive unsolicited advice, even from other medical professionals. For example, I love my dentist very much, despite the fact that every time he sees me now he tells me to get married, have babies, and get surgery ASAP. No pressure.
Q: I plan on having children and breastfeeding. Can’t this wait until after?
A: That depends on you. I personally would not be willing to give up the expanded screening options having positive test results gives you. There is also the possibility of doing IVF and pre-implantation genetic diagnosis, during which you can select embryos that are BRCA negative.
Q: If I don’t plan on getting surgeries, how will being BRCA positive affect my day-to-day life?
A: Maybe it won’t. I personally worried more about being BRCA+ before I got my test results. I still usually think about it everyday for some reason or another, but that usually comes through dealing with medical bills.
One thing you may want to consider is how being BRCA positive would influence your daily medical choices, particularly for things like birth control. Many doctors may tell you that you shouldn’t be on hormonal birth control because it raises your breast cancer risk. Studies show, however, that oral contraceptives can cut your ovarian cancer risk in half. Studies have also shown that low-dose oral contraceptives do not pose the same significant increase risk of breast cancer such as the higher dose pills that were on the market before 1975.
Q: I’ve heard about <holistic/alternative> cancer treatment. Can I manage my risk through diet/exercise/serums/aromatherapy/yoga/kale?
A: While they may have other benefits to your life, any lifestyle changes will produce negligible effects to your risk in comparison to your greatly elevated risk if you are BRCA positive. By all means, don’t take that to mean you should throw caution to the winds and start to smoke a pack a day, but make any fitness & lifestyle choices for yourself and not your BRCA mutation. It will not have an effect on your cancer risk due to BRCA mutation.
Questions I still haven’t figured out for myself:
- Is this something I need to disclose within a certain amount of time to prospective significant others?
- Will I/should I invest the finances into IVF and genetic testing on future embryos to end BRCA in the family tree once and for all?
- Should I not consume this alcohol in front of me?
- Should I not consume this second glass of alcohol in front of me?
Young and positive 