August 31, 2004
You survived cancer. Now what?
Health problems can follow the cure, doctors now realize
By Raja Mishra, Globe Staff
Shari Berman Dicker said she endured hair loss, fatigue and harsh radiation — starting just weeks after her honeymoon — to treat her Hodgkin's disease. It worked, and "I went on my merry way."
Or so she thought.
"It took me four years to even start feeling normal. Then, a few years later, I felt a lump in my breast," she said. The radiation treatment for Hodgkin's disease had caused a new cancer to grow in her breast — and a life once reclaimed entered a new, more frightening stage.
"I had two kids by then. But the breast cancer surgery made it impossible to hold my sons," said Dicker, 40, of Marblehead. "It's hard not to be able to lift your child."
Dicker is one of nearly 10 million Americans alive today after a cancer diagnosis. Many of those cancer survivors are encountering problems, including mental distress and new cancers.
In a sense, this is a good problem, the result of steady progress against cancer, as powerful new therapies help more than 60 percent of cancer patients live five years after diagnosis and beyond. That number is expected to grow as treatments improve and baby boomers continue to reach the age when cancers are more common. Those over 65 are most at risk for cancer; one in six now live with it.
Those treating children's cancers have long been aware of so-called survivorship issues, but doctors and medical centers that treat adult cancers only recently have begun to pay attention to what happens to the patients after they're "cured."
Yesterday, the Dana-Farber Cancer Institute announced it had received a $1 million grant from a charitable foundation started by cycling champion Lance Armstrong that it will use to help open the Lance Armstrong Foundation Adult Survivorship Clinic aimed at treating cancer survivors and researching ways to improve that treatment.
The center would be one of only a few such comprehensive facilities in the country, including those at Memorial Sloan-Kettering Cancer Center in New York and the University of Pennsylvania Medical Center in Philadelphia.
Armstrong, a survivor of testicular cancer, recently jump-started something of a minor social movement around the issue, drawing attention to the problems of survivors, in addition to providing direct funding. His foundation's "LiveStrong" yellow wristbands have become the fashion statement of the moment — worn by dozens of Olympic athletes, among others — and are helping to raise money for survivorship research and care.
Dr. Lawrence N. Shulman, Dicker's doctor at Dana-Farber and a champion of the new survivorship center there, said that for most of his 25-year career it didn't occur to him to think about patients once they left his regular care.
"I focused my everyday attention on the patients in my office much more than on the patients finished with their treatment," he said.
The patients themselves often leave hospital wards feeling like their ordeal is finished — instead of realizing that they may have more hurdles ahead.
The most dangerous risk is a recurrence of cancer, as most are never totally killed off, and dormant cancer cells could attack again. Often, these recurrences are more lethal than the initial cancers. In addition, radiation treatments for some cancers increase the risk for future bouts with the disease.
Various cancer treatments can also lead to sexual dysfunction, infertility, premature aging, chronic swelling, fatigue, heart disease and long-term pain. Cancer surgery can be permanently disfiguring and limit freedom of movement and flexibility. And all of this can prompt stress, depression, anger and anxiety.
Traditionally, adult cancer survivors have only been treated as symptoms came up, not in a systematic fashion. And doctors didn't pay much attention to the long-term consequences of their treatments, as long as they could keep patients alive in the short term.
Shulman, also Dana-Farber's chief medical officer, is particularly worried about the aftereffects of some of the powerful new class of targeted cancer treatments, some of which, physicians are finding out, can also cause heart damage.
"Nobody, frankly, expected that," Shulman said. Solid research on long-term effects of these medications, including Herceptin and Taxol, was lacking when they were unveiled as the latest wonder drugs.
"We don't know what will happen down the line," he said. "We don't know if these patients will have heart disease earlier."
Others of these drugs have been shown to cause nerve damage in feet and hands, as well as osteoporosis.
The Dana-Farber, UPenn and Memorial Sloan-Kettering survivorship efforts include funds for researching such topics.
"We need to better understand the effects of radiation on organs," said Mary S. McCabe, the survivorship program director at Memorial Sloan-Kettering. "What interventions can minimize the problems these patients have? What is the best way to follow patients?"
Dicker's breast cancer was caused by radiation treatment to her chest for Hodgkin's nearly a decade earlier. Since then, researchers have discovered that lower levels of radiation work on Hodgkin's disease — a finding that came too late for her.
"I definitely felt like this was unfair. I was much more emotional the second time. I was more afraid. Maybe it's because I had kids at the time," said the mother of two young boys. "It was this totally overwhelming feeling."
A seven-month course of chemotherapy and radiation killed off her Hodgkin's disease. And a painful double mastectomy dealt with her breast cancer. She has fully recovered.
"My doctors said this is probably it," Dicker said. "But I don't feel secure in that. How do they really know that?"
A little more than a year ago, Dicker attended a Hodgkin's survivors meeting at Dana-Farber, stunned to find others like her.
The Dana-Farber effort originated in its children's program, which took root a decade ago after a donation from the wealthy parents of a young cancer patient, David Perini, who died of a second cancer. Pediatric cancer patients have long survived their cancers, and their adulthood problems were well known to doctors. Dana-Farber's Perini Clinic has cared for pediatric patients for more than a decade.
The new Lance Armstrong center, located off Dana-Farber's main lobby, will begin seeing patients later this year. Patients will be followed and monitored for potential problems, and will be seen by specialists in the treatment of survivors.
Dicker said she wishes someone had been able to do that for her. After her radiation treatment for Hodgkin's disease, Dicker was warned about the future breast cancer risk. But it was her own vigilence — a breast self-exam — rather than a doctor that caught it when it appeared. At the time, the experience of facing cancer twice essentially on her own, with little warning, left her bitter. But she now takes a more philosophic view.
"I don't blame anybody for anything, because they didn't know" how to properly care for her after Hodgkin's disease, she said.
After rising through the management ranks in financial services companies, she decided several years ago to take a break. Now she focuses on her tennis backhand, golf swing, and her husband and two sons, now ages 7 and 10. But cancer continues to lurk in the back of her mind.
"I'm not sure it's over."
