What would you do if you knew that cancer was likely to strike you? How would you handle knowing that you were at high risk for contracting a deadly disease? Andrea Farkas Patenaude, PhD, spends her days helping people answer those questions and conducting research on how people make health-care decisions in the face of such life-changing information.
Knowing the future
Patenaude was working as a clinical and research psychologist at Boston's Dana-Farber Cancer Institute in 1994 when researcher Fred Li, MD, mentioned that his team could now determine who carried the Li-Fraumeni Syndrome mutation and who would, therefore, be at high risk for a variety of cancers. Male carriers of the mutation have more than a 90 percent risk of cancer and female carriers have nearly a 100 percent risk of cancer in their lifetimes. Li proposed that Patenaude, along with oncologist Judy Garber, MD, study the medical and psychological effects of genetic testing on families with the mutation. This research launched Patenaude's career. Since then, she's studied the psychological and social effects of hereditary breast and ovarian cancer and is working on a project to inform and support young women with a high likelihood of developing those cancers. "These hereditary cancers provoke fear and a sense that there's no end to the pain, so it opens up old wounds and brings up many psychological problems," she says.
Patenaude spends about 80 percent of her time conducting research. In one recent study, she investigated what women with a 50 percent chance of carrying mutations that predispose them to develop breast and ovarian cancer know about their risk. She also conducted interviews to find out how women with a high risk of cancer communicate with their families about the disease, what they think about going for cancer testing and how this knowledge affects their lives. "It's impressive how much of people's beliefs about cancer reflect their personal life history rather than medical facts," she says.
For her book "Prophylactic Mastectomy: Insights from Women Who Chose to Reduce Their Risk" (Praeger, 2012), Patenaude interviewed women who elected to have their breasts removed to avoid developing breast cancer. The book outlines the substantial emotional impact of the surgery, which can affect women's body image and sex lives, and discusses the relief these women have in reducing their high risk for breast cancer.
When not conducting research, Patenaude counsels patients who are either considering genetic screening or have already undergone testing and may be considering prophylactic surgery. She helps people who have received news about carrying deleterious mutations come to peace with the fact that they — or their loved ones — could develop cancers at any time. Then, she helps people work through a slew of tough decisions, including whether they should tell their young children. "Helping people find some relief from the stress of having a lot of cancer in their family is the best part of my job," she says.
While patients at the Dana-Farber/Harvard Cancer Center have Patenaude to help them handle life-changing test results, other people who undergo genetic testing aren't so lucky. The number of psychologists equipped to do such work is growing but small, she says. That's in part why Patenaude devotes so much time to research that can help therapists who might not have experience in cancer genetics to understand the issues that arise through genetic testing.
"I'd love it if there were more ways to spread the education about genetics to more psychologists and other mental health professionals, so there would be a larger cadre of trained mental health professionals in the community," she says.
Francesca Di Meglio is a writer based in Fort Lee, N.J.
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