Facing the odds
Cancer risk and prevention program helps patients cope
By Debra Ruder
Among the physicians with the Cancer Risk and Prevention Clinics are (left to right) Sapna Syngal, MD, MPH; Rochelle Scheib, MD; Daniel Silver, MD, PhD; and Judy Garber, MD, MPH.
No matter how well we treat our bodies, we're all at risk for cancer. Whether the culprit is smoking, sun exposure, a faulty gene, treatment for a previous illness, the natural aging process, or a combination of these factors, everyone has a chance of developing cancer in his or her lifetime. In fact, it's estimated that half of all Americans will eventually contract the disease, if you include all skin cancers.
Some people, however, are more likely to receive this diagnosis than others – and helping them understand their risks and stay as healthy as possible is the goal of the Friends of Dana-Farber Cancer Risk and Prevention Clinics. Established in 1992, even before the mapping of the human genome made genetic testing a household expression, the program has grown in size and scope, and now encompasses some 20 physicians, genetic counselors, research coordinators, and other staff. They treat various women's, gastrointestinal, and other cancers and carry out more than a dozen clinical research projects designed to improve early detection and prevention strategies. In addition, several specimen banks that can be tapped by investigators throughout the Harvard medical community to help advance knowledge of cancer.
In any given year, the Friends clinics see some 1,200 patients, most of whom have a personal or family history of cancer, or something else that has made them worry, such as a biopsy result or radiation treatment as a child.
"Part of our time is spent reassuring people who have less risk than they expected," says Director Judy Garber, MD, MPH, who specializes in breast and ovarian cancers. "We know many people don't understand probability in a quantitative way; they feel a lifetime risk of 30 percent means 30 percent every day. So part of what we do is translate the numbers so they're not so overwhelming. You don't want people to be paralyzed by this information, but you want them to be concerned enough that they're ready to do more than the average person toward prevention or early detection."
Garber began the program, with support from the all-volunteer Friends of Dana-Farber Cancer Institute, at a time when few such efforts existed. A cancer risk assessment clinic had begun at Brigham and Women's Hospital (led by MDs Michael Muto and Daniel Cramer) around familial ovarian cancer, and Dana-Farber's unit opened to focus Li-Fraumeni syndrome, a rare inherited disorder that heightens one's risk for several types of cancer and that bears the name of the Institute's Fred Li, MD, who with a colleague identified it in 1969.
"We know many people don't understand probability. … So part of what we do is translate the numbers so they're not so overwhelming."
— Judy Garber, MD, MPH
Soon after the 1992 launch, the two programs combined. With the addition of Sapna Syngal, MD, MPH, who – like her physician colleagues – has a joint appointment with Brigham and Women's, the unit expanded to cover cancers of the breast, colon, stomach, pancreas, esophagus, and reproductive or endocrine systems, as well as sarcomas and other cancer susceptibility conditions like Li-Fraumeni. In fact, the team provides cancer genetics services to all of Dana- Farber's clinical units, including the Jimmy Fund Clinic for those with childhood cancers.
Among the program's beneficiaries is Elizabeth Robinson of Brookline, Mass., who decided two years ago to get tested for the MSH2 gene mutation, associated with colon and endometrial (uterine lining) cancers. Her mother had had both illnesses as well as the mutation, and Robinson wanted to know how to protect herself and her then-unborn daughter. After testing positive for Lynch syndrome – a hereditary disorder that can lead to these cancers – she searched the Internet, found out about Dana-Farber's services, and met with Syngal, who heads the Gastrointestinal Cancer Risk and Prevention component of the Friends clinics.
As a result, Robinson now has an annual colonoscopy, endometrial biopsy, and ultrasound of her ovaries and uterus; she also expects to have prophylactic (preventive) surgery once she's done bearing children. "I feel that knowing is much better than not knowing," says Robinson, 31, who has already contemplated how she'll eventually address the situation with her toddler daughter. "I'll talk about it as she grows up: 'Mom has to have these tests to help her stay healthy, but you don't have the mutation, so you don't have to worry about this until you're much older,' – or, 'When you're in your mid-20s, we're going to go in together for these annual screenings.'"
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