Beating A Killer
Cancer was once the end of the line. Today, it can be managed and defeated
With this host of potential long-term effects--from depression to fertility, from cognitive impairment to cardiac problems--one of the biggest questions for cancer survivors is who should provide follow-up care after the regular oncologist visits end. The new survivorship centers aim to serve as one-stop shopping, with monitoring of recurrence and late effects, psychologists and social workers, genetic counselors and fertility experts all in one place. But they aren't accessible to most Americans, who are treated in their communities, not in major cancer centers.
Primary-care physicians and specialized nurses may be the best bet for most people, but whoever ends up providing the care needs to know what to look for. Once again, while there's a thick sheaf of recommendations for following up children, there's not much for adults. "One of the areas still lagging behind is research looking at least five years post diagnosis, about which we know very little," says Julia Rowland, director of the Office of Cancer Survivorship at the National Cancer Institute. It's starting to happen: The National Institutes of Health has increased funding of survivorship studies, and there's new interest in the field. And the president's cancer panel will issue its first report this year. But the primary source of information on late effects is, for now, the survivor community itself.
Jay Goldberger is just one beneficiary of this new expertise. At 27, he was told that the avocado-size tumor lodged between two major arteries in his nasal passage was a rare, inoperable pediatric sarcoma with a prognosis of six months. Desperate for time, Goldberger and Esther, his wife of two years, moved from Minneapolis to Houston for treatment at M. D. Anderson. The doctors gave Goldberger a powerful, experimental wallop of chemotherapy. "The doctor told me I'd keep getting the first round of chemo until I told him to stop," says Jay. "He said, `You'll know when to tell me to stop because you'll feel like you're about to die.' " One day, that's exactly how he felt.
The Goldbergers stayed in Houston for six months. When they returned home, Jay weighed 130 pounds, down from his usual 200. The chemotherapy had so weakened the healthy tissue in his neck and jaw that he was left with persistent jaw pain, and the drugs so damaged his salivary glands that he must chew gum constantly. But the couple had banked sperm, and after Jay improved, Esther conceived and gave birth to twin girls. When the girls were just 2, Esther was diagnosed with non-Hodgkin's lymphoma. She was also successfully treated at M. D. Anderson, and after finishing chemo she got pregnant the old-fashioned way and gave birth to a boy. Now she's pregnant again, with their fourth due in July.
Those conceptions should have been impossible. But their story shows that what happens on a physiological level may be only partially understood and impossible to predict. In the end, when the diagnosis is given to you or to someone you love, it changes everything. Says oncology nurse Catherine Harvey: "We are now only beginning to understand that how you live with the experience is more important in many ways than how you die."
That's exactly the way Joe Fred Starr sees it. "I have been alive for almost seven years," he says, a ring of modest pride in his voice. "There is no cure for prostate cancer, but I have a decent prognosis, and mentally I am clearheaded, even happy. I am almost what they call a poster child."
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