Studying survivors
Research efforts aim to improve care
now and into the future
By Robert Levy
Kayla Vincent, a 6-year-old from New Jersey who had neuroblastoma as an infant, visits Lisa Diller, MD, and the Perini Quality of Life Clinic for an annual checkup as her mother, Susan, looks on.
In the mid-1970s, Stephen E. Sallan, MD, and his Dana-Farber colleagues began studying something novel in medicine: the health of cancer survivors. About a decade earlier, doctors had produced the first cures for children with acute lymphoblastic leukemia (ALL). Sallan's team wanted to understand why treatments worked better in some children than others and, just as important, whether survivors were at risk for other health problems down the road.
"In children who had been cured, we focused on the consequences of treatment," says Sallan, a pediatric oncologist and the Institute's chief of staff since 1995. "When we saw problems emerging, we started homing in on the parts of our treatment that were more toxic than others, so we could find ways of improving them."
In doing so, they helped inaugurate the field of cancer survivorship research. Their studies, which continue to this day, are responsible for much of what doctors know about the long-term effects of early therapies for ALL, and for advances that have sharply reduced such problems in today's ALL patients. This work was a departure because concerns about the eventual consequences of cancer treatment had, before then, been secondary to the immediate and overriding goal of extending patients' lives.
"In the mid-1960s, doctors began curing patients, particularly children, with Hodgkin's disease, leukemia, and lymphoma," says Dana-Farber Chief Medical Officer Lawrence Shulman, MD. "Both they and the research community spent the next 30 years in highly focused efforts to improve cure rates for all forms of cancer—clearly an admirable goal—but with a lack of attention to what came next."
Survivorship research may have seemed a "luxury" when only a small fraction of cancer patients outlived their disease, but as their numbers have risen, so has interest in exploring their physical and emotional well-being—to the point where survivorship research is now among the most active areas of cancer investigation nationally. Dana-Farber has been ahead of the trend for more than a decade; ever since the opening of the David B. Perini, Jr. Quality of Life Clinic in 1993 to serve those living beyond childhood cancers, survivor-related issues have held an official place in the Institute's scientific agenda.
Now, as the Perini Family Survivors' Center expands its services, research activities are gaining new cohesion and direction. A group of studies by investigators who formerly worked independently is being gathered under a single umbrella, with more opportunities for researchers to share ideas.
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