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The estimated 13.7 million cancer survivors today will grow to nearly 18 million in the next 10 years, according to a report by the American Cancer Society and the National Cancer Institute. Aided by genetic breakthroughs and clinical trials, decades of focus primarily on cures are helping more people live longer.
For many cancers where survivorship was once measured in months, people are now living far longer after treatment. The reasons vary: advances in surgical techniques; better and more targeted chemotherapy and radiation; improved follow-up care; more advanced screening procedures; and a better understanding of the role diet and exercise play in survivorship.
And while this success offers proof that research and enhanced treatment are making a major impact, it also hints at a growing challenge. There is a mounting need to address the myriad physical, emotional, and psychosocial challenges that can arise in the years after initial therapy.
These effects usually vary depending on a patient's age and the treatment received. For example, a baby or toddler who receives radiation for a solid tumor might not grow normally in the area of radiation. And people treated for a variety of cancers as children can have fertility problems 10 or 20 years later.
As survivors progress through middle age and beyond, challenges that affect all individuals during these periods can be especially problematic. Survivors are also at a 14 percent higher risk of developing a new (or secondary) cancer later in life. As oncologists continue to learn more about how to predict and handle these "late effects," they say a greater emphasis needs to be put on getting survivors the specialized care they need.
"When patients enter survivorship, they are often seeing doctors and other health care providers who are not experts in their particular cancer," says Ann Partridge, MD, MPH, director of the Adult Survivorship Program at Dana-Farber/ Brigham and Women's Cancer Center (DF/BWCC). "These providers may not be aware of all the potential risks of the therapy, problems that may arise in the future, as well as the likelihood that somebody might hear from that cancer again with a late recurrence."
By studying patients with very complex after effects from their treatment, Dana-Farber clinicians have been able to help these individuals, emotionally, physically, and vocationally. By understanding more about the risks associated with treatment, they can also make recommendations about specific screening tests (such as breast cancer screenings for childhood cancer survivors). And, by taking what they have learned and bringing it to the next generation of patients, they are able to alter treatments – so that long-term effects are lessened.
Led by Partridge and Lisa Diller, MD, chief medical officer of Dana-Farber/Children's Hospital Cancer Center (DF/CHCC) and director of Dana-Farber's Perini Family Survivors' Center, clinicians are developing embedded survivorship clinics within each of Dana-Farber's 14 treatment centers. The goal is to ensure that all patients seen at DF/CHCC and DF/BWCC get the most focused, comprehensive care possible not only to treat their cancer, but also to manage the aftermath of the disease.
"In this model, patients get the important survivorship attention they need, but they get it from a health care professional who has experience in caring for patients with the disease that they've had," says Partridge. "Ultimately, we want to disseminate this approach all around the world, so that more patients can benefit from the availability of embedded experts and high-level, across-the-board care."
Diller, who also leads efforts to provide survivorship care for patients treated for childhood cancer, says the Dana-Farber survivorship community sees part of its mission as providing primary care physicians (PCPs) with the necessary tools to take on cancer patients requiring routine follow-up care.
"There are services in the community where the care of the patient is best integrated by a PCP," Diller says. "As a long-term goal, we want every patient who completes primary therapy in our cancer program to have a plan going forward that includes the right cancer follow-up and integration with primary care."
The work being done for pediatric cancer survivors through Dana- Farber's David B. Perini, Jr. Quality of Life Clinic serves as a successful model. All pediatric patients completing therapy at DF/CHCC have a "transition visit," in which they receive a treatment summary detailing all their stages of care and the risks of after effects, as well as a notebook with more detailed information about their specific cancer. The summaries are passed on to the patients' PCPs, with another copy placed in the child's DF/CHCC medical record, so that doctors here can best communicate with outside providers. The goal is to make the records entirely electronic and extend them to adult survivors.
"Survivorship programs at a cancer center can provide important services for survivors, especially consultations and care for cancer-related health problems," explains Diller. "Most survivors will do well with a model of PCPs partnering with treatment center-based survivorship experts at Dana-Farber."
In addition, Partridge will be advancing the development of a group of treatment center-based nurse practitioners and other caregivers focused on survivorship.
For this model to work, of course, there need to be strong lines of communication between oncology providers – including those focused on survivorship – and PCPs, along with better ways for PCPs to access knowledge about what cancer survivors need.
"When I see patients in my survivorship clinic and I send notes back to the PCP, there have been several occasions when I've gotten calls along the lines of, 'Thank you – I had no idea that certain kinds of chemotherapy can put people at risk for heart problems later on,'" says Saul Weingart, MD, PhD, vice president for Quality Improvement and Patient Safety at Dana-Farber. "There is a knowledge deficit out there in the primary care world, and we need to do something about it."
Some outside physicians are already doing their part. For example, Larissa Nekhlyudov, MD, MPH, an internist at Harvard Vanguard Medical Associates in Boston and associate professor in Population Medicine at Harvard Medical School, recently wrote an editorial in the Journal of Clinical Oncology on the opportunities and challenges PCPs face when providing comprehensive care for cancer survivors. She says that a growing percentage of her current general medical practice are cancer survivors referred from Weingart, Diller, Partridge, and other Dana- Farber oncologists; she agrees with Weingart that the key is more education – as early as possible.
"When I went through my medical training in the 1990s, oncologists didn't think about cancer survivorship; the goal then was getting people treated and into remission," Nekhlyudov explains. "We really need to change our approach in medical education and training and get it into the minds of young medical students and residents, so they really think about survivorship in a different way – or think about it, period."
Paths of Progress Fall/Winter 2012 Table of Contents