Every June, Melissa Pandolfi heads to New Haven for what she calls “a physical, times 12.” She gets blood work, an electrocardiogram, bone scan, bone density scan, and chest X-ray, along with a document detailing her health risks and treatment history.
“I look forward to going back, as much as I hate being pricked with needles and things like that,” said Pandolfi, 28, who grew up in Branford and lives in New York City.
Thirteen years ago, the summer before her sophomore year in high school, Pandolfi began to limp. An orthopedic surgeon didn’t find anything, but six months later, an X-ray showed a shadow on Pandolfi’s right femur. It turned out to be Ewing’s sarcoma–bone cancer.
Pandolfi went through 17 chemotherapy treatments and had a partial hip replacement. She’s been healthy since then, but she knows that chemotherapy can lead to fertility issues, heart problems or leukemia. Her June check ups at the HEROS Clinic at the Smilow Cancer Hospital at Yale-New Haven are part of an effort to prevent the late effects of cancer treatment. Pandolfi says they give her peace of mind.
They also make her among the minority of cancer survivors to get such care.
The HEROS Clinic, like similar programs across the country, exists to fill a void in care for patients who survived cancer but remain at risk for potential late effects from their treatment. The survival rate for childhood cancers is now close to 80 percent–a success that comes with side effects.
“Now the problem is that the toxicity from the treatment can be pretty high in some of the regimens,” said Dr. Eileen Gillan, medical director of the STARS Survivorship Clinic at Connecticut Children’s Medical Center in Hartford.
But dedicated care for late effects remains the exception. Oncologists are usually busy treating patients still fighting the disease, while primary care doctors tend not to be experts in chemotherapy agents and their long-term effects. As the number of cancer survivors grows, it’s still not clear what part of the medical profession will be responsible for their follow up care. Currently, about 70 percent of cancer survivors don’t get follow up care, said Dr. Nina Kadan-Lottick, medical director of the HEROS Clinic.
Even when care is available, getting patients who have finished cancer treatment–who think they’re done with medical visits–can be tricky. Kadan-Lottick describes HEROS as a wellness clinic, but it still can be a hard sell. She thinks it would be best to mention the need for ongoing care when patients are first diagnosed, to present cancer as a journey, not an episode.
“We haven’t really shifted to think of giving the patients the mindset that they need ongoing wellness care,” she said.
Warding off late effects
With the afternoon patients set to arrive on a recent Monday, the HEROS medical team laid out a plan. For one patient, a 12-year-old girl, Kadan-Lottick ordered regular blood tests and a talk about avoiding alcohol when she gets older. For another, a 10-year-old, they determined that the main focus should be how he’s doing in school, and he should also get a bone scan and tested for cataracts. An adult patient who had had a brain tumor as a baby had a wide range of needs, but the team decided to focus on getting her a primary care doctor and a visit to an endocrinologist.
Late effects of cancer treatment can include cognition problems from radiation to the brain, heart damage from chemotherapy agents, or the effects of losing a limb. Survivors can also be at risk for hormonal problems, lung scarring, and, in rare cases, subsequent cancers.
In addition to Kaddan-Lottick, a hematologist-oncologist, HEROS–Health, Education, Research and Outcomes for Survivors of Childhood Cancers–has a psychologist who meets with patients, nurses who provide health education, a social worker and access to an endocrinologist to review cases. About 40 percent of cancer survivors have psychosocial, learning or emotional issues, Kadan-Lottick said. Many patients who had brain tumors and received radiation have very low IQs, so the clinic tries to connect them with job training programs and other services.
There’s also advice for patients. One tip: Try to work for a large employer, so you won’t be subject to pre-existing condition clauses when you try to get health insurance.
Some treatments for late effects that childhood cancer survivors face are time-sensitive, including growth hormone replacement and efforts to protect fertility. Others can progress before symptoms appear but could be controlled if found sooner, including heart muscle disease.
But not all conditions health care providers notice in cancer survivors stem from their treatment–at least, not directly.
As the HEROS team made a list of things to check for one new patient, a 12-year-old girl who had a kidney removed as part of her treatment, the discussion turned to exercise. Kadan-Lottick said she’s seen many survivors of the same cancer who are overweight–she thinks because they have only one kidney and are protective of it, avoiding sports.
“Let’s see if she’s physically active,” she said.
A place for adults, by default
Living in Miami, Stuart D’Arcy, a two-time leukemia survivor, got regular follow up care. When he moved to Connecticut, he began going to HEROS, which he said is more rigorous. And it’s different in another way–in Florida, he got check-ups along with people still in treatment for cancer.
“Which can be a little bit depressing, because when you are a person who’s had cancer, you’ve had people die around you and things of that nature,” he said. “Whereas the HEROS clinic is set up as the survivorship clinic.”
Kadan-Lottick tries to limit the screenings each patient receives to those targeted at conditions that there is evidence to suggest they’re at elevated risk for, based on their treatment. There are risks to overscreening–false positives, and giving patients a sense of worry. She likes to also emphasize what they are not at risk for.
“Not everyone is at risk for everything, and part of survivorship care is reassuring people,” she said, noting that, for example, not all chemotherapy causes infertility. “Part of it is helping people understand what their individual risk is and knowing what they should be doing in their life to minimize it and how to stay healthy as well.”
Both the HEROS and STARS–Survivors Tackling All Roadblocks Successfully–clinics make a point of providing health education to patients. Gillan noted that the patients are very mobile, and it’s best to ensure that they know what care they’ll need as they get older and learn how to advocate for their health care.
“Whatever we could do to make this population of kids not just survive but thrive is what we need to do,” she said.
One thing they don’t have: Anywhere to send patients when they get older. “We’re trying to fix that problem, but right now we’re seeing patients up to any age that have been treated for pediatric cancer that do not have follow up,” Gillan said. At HEROS, some patients are in their 50s.
Ultimately, Kadan-Lottick hopes that most survivorship care will be handled by primary care physicians, as part of patients’ regular care, with survivorship clinics for patients with the most complex cases. As more doctors use electronic tools like electronic medical records, it could be easier for them to learn quickly what tests and screenings their patients who survived cancer need, she said.
Whoever provides it, Kadan-Lottick sees follow-up care as a necessary part of cancer care. She doesn’t want to see children beat cancer, then have a poor quality of life because of the toxicity of their treatment. Her goal is for patients to live well afterward, she said, “to your full potential.”