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“Cancer survivors are at uniquely high risk for medical problems related to their initial cancer or the cancer treatment,” said Friedman. “They need to be educated about those risks and what they and their doctors should look for and what special screening tests they may need throughout their lives. We put this all together in a coordinated package for them so they really understand what it means to adjust to a new normal.”
That detailed individualized survivorship care plan, including a risk analysis, is sent to the patient’s oncologist, primary care physician, specialists or any other care provider identified by the patient. The patient also leaves the survivorship session with a notebook filled with educational information, and a list of additional support resources.
Making the transition from cancer patient to long-term survivor can be stressful for patients and their families, especially when the patient is a child.
“From the time a child is diagnosed, the end of treatment is dangling in front of them like a brass ring,” said Frances Niarhos, Ph.D., clinical psychologist in the Department of Pediatrics at the Monroe Carell Jr. Children’s Hospital at Vanderbilt. “They don’t realize that this transition time is going to be difficult, too.”
Many children are at risk for neurocognitive late effects that are a direct result of the treatment they receive to fight the cancer. Cranial radiation for brain tumors may affect the way the brain grows and develops following treatment. Treatment for acute lymphoblastic leukemia (ALL) can also impact a child’s development.
“Those children receive intrathecal chemotherapy, which is injected directly into the spinal column to target leukemia cells that remain hidden in the brain and cerebral spinal fluid,” said Niarhos. “These intensive treatments may impact a child’s neurocognitive development. It’s not that they’re not gaining skills following treatment, but they may not be gaining skills at the same rate as their healthy peers.”
Niarhos and the other two psychologists on the survivorship staff recommend baseline neurocognitive testing for every child who has received treatment that places them at risk for late effects.
“The younger a child is when treated, the more likely that child is to demonstrate a late effects profile,” said Niarhos. “For reasons we don’t fully understand, girls seem more likely to develop neurocognitive late effects.”
The psychologists work with teachers and school systems to help students succeed after cancer treatment.
“These are often bright kids but they may have very slow information processing speed,” Niarhos explained. “It’s not that they can’t do the work their peers can do, but they need extra time in order to achieve at the same level. Once this is explained to the students, the parents and the schools, and they are given more time for things like standardized tests and other assignments, these students are able to flourish.”
Hearts and Minds
Adult cancer survivors experience their own neurocognitive challenges. “Chemo brain” is the term survivors often use to describe the slow, fuzzy attempts to access memory and to process new information after treatment. This sluggish brain function can be frustrating and emotionally stressful to patients, especially adults who are trying to work during and after treatment. The REACH clinic is helping patients with these issues by providing referrals for support services.
Other long-term side effects of treatment are physical and they represent the double-edged sword that is cancer treatment. The very treatments that are supposed to save patients from cancer can put them at risk for other life-threatening diseases.
Some forms of chemotherapy, including anthracyclines, fall into that category.
“We treat some forms of breast cancer with anthracyclines, which puts those patients at risk for heart failure,” said Julie Means-Powell. “The average cardiac risk for a woman at the dose we typically give is 2 to 4 percent. But women over age 65 or those who have longstanding hypertension are at increased risk. So there is definitely a chance that you could be cured of a cancer but then die from complications of heart failure.”
Vanderbilt-Ingram oncologists are collaborating with physicians at the Vanderbilt Heart and Vascular Institute to monitor those patients. This cardio-oncology program is tightly coordinated with the REACH for Survivorship Program, and Friedman works closely with the cardiologists to develop pathways and studies for follow-up.
“They have helped me follow these patients with an integrated program, which I think is pretty unique,” said Means-Powell. “They also are enrolling breast cancer patients in clinical trials to look for early signs of decreasing heart function during chemotherapy.”
Other types of anthracycline chemotherapy drugs, like
doxorubicin (Adriamycin), also increase the risk for acute leukemia in about one-half of 1 percent of cancer patients, so physicians must weigh the benefits of the drug against the serious risk of another illness.