Every woman is somehow affected by breast cancer. It's a loaded and emotional topic that incites sadness, panic and — most of all — fear. Yesterday, actress Angelina Jolie wrote a transparent, honest and informative article in the New York Times revealing that she had a preventative double mastectomy because she is a carrier of the breast cancer gene. Jolie explained, "My doctors estimated that I had an 87 percent risk of breast cancer... Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much as I could." Jolie took control of the possibility of a breast cancer diagnosis, and in doing so minimized her risk to under five percent. At first blush, it would seem that the obvious next turn is for every woman to get tested to see if she has a defect in BRCA1. But not every woman feels the same way.
No, thank you
Two time cancer survivor Elena Sonnino says she's just not sure if she'd want to know. She says, "We have so little control over just about anything and I believe that everything happens for a reason. So somehow, as a survivor that dreads having to go through treatment again, when it comes to testing for a gene, I'm not sure I would do it."
Elena explains that the fact that she has already survived cancer and that she knows exactly the kind of focus and fight that it takes to do so, affects her opinions. She says, "I'm a firm believer in living every moment and making every single moment matter, but I'm not sure that knowing would help me make the most of every moment. I'm afraid that I would spend too much time worried, anxious or afraid — and that I would be distracted from living life."
Katie Kavulla's fear of breast cancer is prominent and at the forefront of her mind, and her doctor appointments. Katie says, "I assume that I will have breast cancer. While I struggle with whether or not I accept this fate, I realize that it's likely my reality. Most of my female relatives, the ones whom I share genealogical makeup with, have had breast cancer in varying forms, and at 32, I have my first mammogram scheduled for later this year. It's been about six years since my doctor and I discussed having the breast cancer gene test done. At the time, she put the writing on the wall, recommending that I not have it done unless I'm willing to take the potentially frightening results to the next level, if need be. To do what Angelina Jolie did. While a double mastectomy doesn't scare me, having proof that I was destined to have breast cancer, regardless of being able to knock my chances of getting it down to nearly nothing, is terrifying."
What it seems to come down to is the acceptance and mitigation of fear. Deborah Gilboa, M.D., explains, "Once a woman knows what her risk is, she often starts to think of her breasts — and her health — as ticking time bombs. This very reasonable fear can impact many areas of her life. This changes her thinking in the shower, during sex, while clothes shopping, while cuddling with her kids or partner. For some women, a preventive mastectomy is the best way to take control of this looming threat. In fact, it's one of the most certain ways to prevent something that feels — and sometimes is — inevitable if she doesn't."
This is the case for Lynn Tanner, a physical therapist who works with children with cancer. Like Angelina Jolie, Lynn tested positive for the breast cancer gene and will be having a double mastectomy. But that definitely wasn't her original plan. Lynn explains, "My mom was tested because she had a type of breast cancer that is highly genetic and related to the breast cancer gene. When she first got tested, I didn't want to know. I didn't want to live with impending doom. I didn't want information that would make me scared."
What changed for Lynn was after watching her mom go through two separate bouts of breast cancer and two mastectomies, she went for her first mammogram and realized that the process of preparing and going and waiting and worrying twice a year wasn't for her. So when a genetic counselor told her that she should get tested and if she had the gene, she'd have an 80 percent chance of getting breast cancer by age 70, she decided right there and then to have a double mastectomy.
At that point, Lynn's decision felt so clear cut for three reasons. She says, "First, I watch kids go through cancer every day and if I can prevent some of that hardship for myself and for my family, I will. Second, my breasts are not my identity. When I was 18, I watched my mom make the same decision without a second guess and she talked so openly about the fact that it didn't matter what she looked like — she just wanted to live a long life. She didn't even get prosthetics. And third, for me, I don't want to put myself through the repetitive stress of getting tested. It's a gift for me to know that I can do something about this before it happens. My patients, and my mom, didn't have that choice."
The choice is yours, make it
Every woman we spoke with passionately advocated for women making their own choices about being tested for the BRCA1 gene and doing what's best for them and their families. There's not one right answer here. Rather, the true gift lies within opening the conversation, educating ourselves and others and making thoughtful choices about our health.
If you're wondering about your own BRCA genes, Dr. Gilboa says, "Talk to your doctor. Do a little family research first. Your doctor is going to ask if any of your relatives have had cancer, at what ages and what kind. Ask around to see if anyone else in your family has done the BRCA testing. You'll also need to discuss your age when you first got your period, birth control you've used, how many times you've ever been pregnant, how many of those pregnancies resulted in a baby, if you breastfed and for how many months. And be open to the possibility that testing may not be necessary for you, given your history and risk factors."