The Surgery Decision
Anna thought she’d left breast cancer behind after undergoing a lumpectomy, chemotherapy and radiation in 2002. So it was a shock when, thirteen years later, the cancer reappeared. She felt certain about her decision to have a double mastectomy after this second diagnosis last November. But when it came to deciding whether or not to have reconstructive surgery, she was less certain. The night before her surgery consult, Anna took the advice of her care coordinator and reached out to Firefly Sisterhood in hopes of finding support to help her navigate the choice she faced.
Within hours, Anna had talked with three Guides: Debbie, who had chosen reconstruction, and Michele and Diane, who had not. These short-term matches proved instrumental in helping Anna make—and feel confident about—her decision.
Debbie, who had also had a double mastectomy after her second diagnosis in 2010, describes, “I always knew I would want reconstruction if I faced that decision. So for me, it was just a matter of finding a surgeon I trusted and felt comfortable with.” And like Debbie, Diane says that the choice felt very straightforward after her diagnosis with an aggressive stage 3 cancer: “I decided pretty quickly on a bilateral mastectomy with no reconstruction. I was small to begin with and not really concerned about trying to reconstruct my breasts. My priority was healing and completing the remaining treatment.”
Michele also opted to forgo reconstruction after her single mastectomy. She remembers, “My personal guiding opinion all the way through was that I wanted as much surgery as necessary to give me the best outcome, and no more.”
“All of [my Guides] were very happy with their decisions,” Anna says, a fact that was very reassuring to her. But she was perhaps most struck by what Debbie shared about the experience of surgery and recovery, which was quite different from what Anna expected after her initial conversations with clinicians. Their discussion confirmed her sense that the process wasn’t one she wanted to go through. “I decided not to do it,” she reports, “and I believe I made the right decision for myself.”
Diane notes, “I think it’s really important, especially for women who are contemplating not having reconstruction, to be able to talk to other women who have made that choice, because the medical community and our society in general often just assume that women are going to want reconstruction.” Similarly, Michele says, “I guess I just really want all women to know that there is a choice here. Every person needs to decide for themselves what they need to do to feel comfortable. There’s not a right decision, there’s just a right decision for you.”
Debbie noted that even after the initial decision, women who do choose reconstruction often benefit from support along the way: “There are so many decisions that come along with surgery, and the process of reconstruction is such a long road—you don’t always hear the details of what it’s like up front, and I’m so glad I can reassure them that it will end up being what they wanted.”
Anna found the personal connections with her Guides to be not only comforting, but also crucial to her decision-making process: “It was wonderful to know that people wanted to talk and wanted to share. And they have personal experience, not what you read in a book—they’ve been through it and they survived.” She developed a particularly strong connection with Michele, with whom she’s maintained a relationship. “It’s a synchronicity, really—we have a lot of similar interests…and we just connected really easily,” says Michele. She’s quick to point out that she benefits, too: “I think that’s one of the really important parts of the whole Firefly Sisterhood model—it’s such a long-term process that [even when you’re years out of active treatment], it helps to be in a community of people who have shared that experience.”
Similarly, Debbie points to how connecting with people like Anna has helped her: “I’m here, and my life was saved, so that I can help someone else on their journey…it makes me see how far I’ve come, and it makes me feel good that I can help people making these incredibly difficult decisions and give them some peace of mind.”
That peace of mind, for Anna and for so many women facing decisions like hers, can come from simply having the chance to process what they’re going through with someone who understands. As Michele describes, “What so often happens from the minute you’re diagnosed—it’s like you have a row of dominoes, and once that first domino goes down…things are happening to you. And if we can just move that first domino out, and create more space for choice…it’s in those choices that you can reclaim a sense of control.”
One of the valuable things about the Firefly Sisterhood, she continues, is that Guides can “help slow the dominoes down so that a person can think out loud and get the information she needs to make a wise choice, including from people who have been down her path.”
Diane echoes, “The Firefly Sisterhood concept is exactly what [recently diagnosed] women need—somebody to walk with them through it all and to be their hope.” With the support of Debbie, Diane, and Michele, Anna found that hope, and found peace in her decision.