The value of follow-up
"I'm so happy to be alive," says Bonnie Martin, a patient of Rich Boyajian, RN, MS, in the Lance Armstrong Foundation Adult Survivorship Clinic at Dana-Farber.
Although some cancer survivors draw strength and a newfound appreciation for life, many face a host of physical and/or emotional challenges and uncertainties. These may depend on such factors as their age at diagnosis, type of treatment, access to care, financial pressures, faith, and coping mechanisms.
While some survivors want to put the experience completely behind them, others worry or even become paralyzed with fear of recurrences or secondary cancers, notes Boyajian. Most are probably somewhere in the middle. Regardless of where they are on the spectrum, however, there's the realization that while they may be physically cancer-free, they're never free of cancer.
Follow-up care, according to those who work with survivors, can help clarify individuals' known risks from radiation, chemotherapy, and surgery—and take action if they choose. For example, they can be screened for possible osteoporosis, heart conditions, and colon and skin cancer. Cataracts and dental issues resulting from treatment can be addressed by specialists. Nerve and lung damage can be alleviated—or at least stabilized.
"Survivors have real fears; they've gone through a life-altering situation, and they know it could come back," says Boyajian, who himself withstood a bone marrow transplant for chronic myelogenous leukemia a decade ago. "If you don't know your risk, you won't be able to lower it or prevent future problems. I hope our work gives people a little more sense of control and a chance to contribute to research. Our goal is to help them get on with their lives and get back to regular, age-appropriate health screenings."
Launched in 2003, the Perini Family Survivors' Center serves three overall goals, according to Dana-Farber Chief Medical Officer Lawrence Shulman, MD, who led its development along with center Director Lisa Diller, MD. These goals are to provide or direct survivors to support services, conduct research (see related story, page 5), and use that knowledge to redesign therapies and lessen the side effects for future patients.
The center and its adult component are based on the proven success of the David B. Perini, Jr. Quality of Life Clinic, established in 1993 by a local couple—Institute Trustees David and Eileen Perini—to honor their late son. Survivors of childhood cancers who have been off treatment for two years can meet there with a team of physicians, nurses, psychologists, genetic counselors, and others. They may also sign up for support groups and educational programs aimed at raising awareness and connecting survivors with each other.
In the Stop & Shop Family Pediatric Neuro-Oncology Outcomes Clinic, specialists help children who received treatment for brain tumors cope with late effects such as seizures, growth issues, and learning challenges. During each patient's annual visit, members of the multidisciplinary team, including a variety of medical and psychosocial clinicians, assess the patient, then convene as a group to discuss the case and finalize recommendations to the patient and family.
One such patient, Elizabeth Cesar, underwent surgery for a brain tumor in 1995 at age 13 and now receives follow-up care through the outcomes clinic. As a result of the type and location of the tumor, Cesar experiences impaired short-term memory, sleep difficulties, and significant weight gain. Clinic staff monitor her health with interventions such as nutritional counseling and endocrine assessments; the team also helps identify practical tips for Cesar's daily living, including carrying a notebook to write down items she might otherwise forget. "I find the visits very helpful," says Cesar, a pharmacy technician in the Boston area. "It's been hard. Even though my surgery was 10 years ago, I'm still dealing with this disease every day."
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