Regretting Double Mastectomies
While she was an oncology nurse at Sentara Martha Jefferson Hospital, Crystal Chu grew accustomed to some patients’ impulsive response after they’re diagnosed with cancer in a single breast.
“Cut them both off,” many women said to Chu, now a PhD student. “I’m ready.”
Chu’s response was always gentle, and more tempered.
“I usually asked them why they’re ready to have a double mastectomy,” explains Chu, who says fear is often the primary driver, “and then explain that such surgery does not guarantee they’ll remain cancer free, and may actually delay or even inhibit treatment of the cancer they have.”
6x
Rates of Contralateral Prophylactic Mastectomies have grown six-fold between 1998-2011, called the "Angelina effect"
Chu just earned a highly competitive $30,000 grant from the American Cancer Society to fund the work, "The Use of a Decision Aid for Contralateral Prophylactic Mastectomy" over the next two years.
Chu is one of a small but growing cohort of UVA students pursuing a PhD in nursing at a time when the demand for nurse researchers and academics is sky-high. With the average age of nursing professors in the U.S. now nearly 63, and one-third of the nation’s nursing faculty workforce expected to retire by 2025, the scarcity of nursing professors hits at a time of immense interest in the nation’s most trusted profession. And while master’s-educated nurses often teach students at the bedside, it’s doctorally-prepared nurses who do research and mentor students and remain in almost incredible demand.
At UVA, Chu is typically atypical. A first-generation college student and graduate of UVA’s RN to BSN program, Chu’s first nursing research job was to recruit breast cancer patients into clinical oncology trials, some of whom coped with a barrage of unanticipated complications after surgery, including infections, pain, depression and decisional regret.
It was the job, Chu says, that changed everything.
“I was seeing things I really wanted to fix,” recalls Chu, who grew up in rural Virginia and is a first-generation college student. “I learned about my patients’ struggles with body image, lymphedema, their marital concerns, and was deeply moved.”
The work also made her realize that to improve how these patients are treated, current systems needed to be studied, new ideas pondered, tested, and disseminated – just the kind work a nurse scholar does. Chu soon took a position with noted UVA nursing professor Patricia Hollen, who had earned multi-million dollar National Institutes of Health grants to develop decision aids for lung cancer patients, applied to and enrolled in the PhD program, and never looked back.
For her dissertation, Chu is testing a novel decision aid on patients who have been diagnosed with breast cancer in a single breast. The decision aid, delivered on an iPad by a nurse in a hospital, aims to better inform these patients of the full spectrum of risks and benefits to surgical and non-surgical options, including the risks inherent if they choose to opt for a Contralateral Prophylactic Mastectomy, or CPM, in which both the cancerous and non-cancerous breast are removed.
Women who choose CPMs and have both breasts reconstructed may regret their choice down the line, Chu explains, due to issues with surgical complications, infections, arm mobility issues, post-operative pain, sexual dysfunction, and body image.
Knowing that better-informed patients who make decisions in concert with their care providers have better outcomes and experience less regret, Chu’s hopeful that the decision aid she’s developed will decrease the rates of CPM, which have, between 1998 and 2011, grown six-fold. Today, nearly one in five women with cancer in a single breast opt to have both breasts removed, despite the fact that there is no evidence that it reduces mortality and increases survival.
CPM is “a much more complicated surgery,” explains Chu, “and poses a greater medical risk, a greater likelihood of pain, possibility of infection, a longer recovery time, and, by virtue of that, may require a longer wait time to administer subsequent chemotherapy and radiation treatments to fight the cancer in the diseased breast.”
While there are other decision aids available for breast cancer patients, Chu’s is the first to emphasize shared decision-making and an interactive balance sheet that takes pain, risks, costs, and recovery into account.
Chu hopes the decision aid—which will be tested on 50 local women starting this spring—will enhance their decision-making and, ultimately, reduce the number of CPM procedures among low-risk women.
“There’s a belief that CPM gives women control to defeat cancer,” says Chu, “and ensures long-term cancer-free survival. The thing is, that just isn’t the case.”
For Chu, a PhD “had always been a goal,” even as she works, is a wife and a mother to two young children. And as she inches closer to earning a doctorate, Chu says she’s reaped the benefit of UVA’s small, tight-knit program, close mentoring, and the chance to make changes through nursing research that will impact people’s lives.
“I went into this work hoping to make a difference,” she says. “I always wanted to do something meaningful and now I feel like we are really working toward something; we’re making that change.”
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To urge more nurses to consider research and teaching as a career, UVA’s PhD program now offers four years’ free tuition and generous stipends, and a chance to work with world class scholar-mentors. For more information, visit nursing.virginia.edu/academics/phd.