Lisa S.

Lisa S. received a disturbing phone call from the nurse navigator during her lunch hour about a year ago, in her mid-50s. The navigator immediately announced that Lisa’s routine mammogram showed signs of ductal carcinoma in situ (DCIS) breast cancer. Without missing a beat, the navigator immediately tried to schedule Lisa for a “mastectomy consultation” with the surgeon. To slow down the disturbing information flow, Lisa asked the navigator to define DCIS. Learning it meant “ductal cell in situ,” Lisa recalled her Latin and replied, “in situ means in place… it hasn't spread, right?” The navigator then reminded Lisa that due to her positive BRCA mutation status, “they will probably recommend a mastectomy.” Lisa, a healthcare provider herself at the same organization, notes several problems with this interaction. First, the diagnosis should have been delivered by a doctor not a nurse navigator. But if the navigator was going to deliver this news it would have been better to ask, “is this a good time?” The navigator should have checked out whether and how Lisa was ready to hear such devasting news on the phone. Or, since the navigator worked in the building next door from Lisa, she could have said, “why don't you come in so we can chat?”

Putting aside the very shabby way she received her diagnosis, Lisa recognized that BRCA was indeed “a game changer.” Learn more about Lisa’s experiences with testing positive for a breast cancer gene mutation here. She calculated her risk for advanced breast cancer (despite her prophylactic oophorectomy) and knew she had to “consider bigger options.” While DCIS usually means a lumpectomy, Lisa recognized the need for a double mastectomy and reconstruction surgery. It was frightening. She knew she was going to live—but feared losing her “good life” and her “sexual self.” Peer counseling through a local Ashkenazi Jewish BRCA advocacy group was a godsend. With the space to lay bare her fears and ask questions, she prepared herself psychologically and emotionally for losing her natural breasts. Over eight weekly sessions, Lisa came to accept she’d “had a great run,” that life will change, and she would figure out something different, and that “you can't mourn the things that you might not get in the future… You've got a new experience coming up. Someone's handing you a baton, a new baton. It wasn't what you expected, but you better run with that thing.”

With great social support and insurance, Lisa recovered from the pain and complications of her surgeries. She has since resumed running and working out, including a barre to “keep things stretched out.” She notes some loss. Her new breasts have no sensation. “They don't really feel like mine,” noting they are more like prosthetic or a bra—that she can’t take off. On the other hand, she loves her new breasts, even though they are smaller, and she doesn't have as much cleavage as before, she likes how they “look in a dress” and that she can go running without a bra. She really appreciates that more than one person has said, “you look fabulous.” In sum, Lisa notes, “I lucked out.”

As her first breast cancer anniversary approaches, Lisa counts her blessings. Given that she has a BRCA gene mutation, she knows she is lucky it was found at the non-invasive stage. She has been able to resume the things that gave her joy in past, and she has taken up new activities—primarily connecting with others who share her experiences. She started an online “safe room” for BRCA survivors. Given her genetic risk for breast cancer, Lisa will always worry. She hopes that the cutting-edge research on immunology and personalized medicine might discover less invasive treatments “than double mastectomy” for people with BRCA mutations and DCIS. As a provider in a family practice clinic, Lisa would like to “pay it forward” by working with cancer patients. She’d like to hold their hand and let them know “we're here for you.” To friends and family of someone with breast cancer, Lisa notes, “it's very hard to ask for something. It's always easier to receive.” Specific actions are much better than general offers like, “call if you need anything.” A card or a letter, or a text, or an email, she says, “is always very wonderful,” or “you can always come over to change the cat litter,” or “pick up some milk for me.” To others who are BRCA positive and diagnosed with DCIS, Lisa emphasizes the importance of finding someone who will sit with you and say, “tell me. Tell me. I want to hear how you're dealing with this.”