Anne, 51, has been battling cancer for almost half of her life. Diagnosed at age 28 with Hodgkin’s lymphoma, the real estate broker from Lansdale, Pennsylvania, has been hit with two other cancers since that first one was cured. What has helped her cope with all the turmoil with her sanity intact? The unflagging support of Linda Jacobs, the “angel on my shoulder” who has checked in with Macy regularly to answer questions, see how she’s feeling physically and emotionally, and offer support and the occasional gentle prodding needed to get her through all the tests and follow-up that come with a cancer diagnosis.
Jacobs, a nurse practitioner and clinical professor of nursing who directs the development of cancer survivorship programs at the Hospital of the University of Pennsylvania’s Abramson Cancer Center, may have even saved Macy’s life. When the protocol for ongoing surveillance of Hodgkin’s lymphoma survivors changed, Jacobs alerted her that she needed a breast MRI. That test revealed MALT lymphoma in Macy’s breast, and a follow-up PET scan uncovered a tumor behind her ear. “I can’t imagine getting through these life-altering events without Linda’s consistent aid,” Macy says.
The pioneering program at Penn, launched in 2001, now is one of dozens of hospital-based programs created across the country to provide long-term follow-up care – physical, emotional and even financial – to cancer survivorsafter treatment has ended. That’s a growing group. “We’re in a very different place than we were even in the 1990s,” Jacobs says. “People are now living with cancer as a chronic illness.” There are 15.5 million Americans now who are living as cancer survivors, and that number is expected to rise past 20 million by 2026 because of improvements in detection and treatment.
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What’s more, the graying of the baby-boom generation is expected to dramatically boost the number of elderly survivors, who often suffer from other ills exacerbated by their cancer treatments. Experts are predicting a “silver tsunami” of survivors with complex health issues who will benefit from practical and moral support.
Their challenges are many and varied. Patients have to deal not only with the symptoms of their disease and the ravages of chemotherapy and radiation, but also with emotional turmoil like anxiety, feelings of hopelessness and changes in self-image. Some people struggle with permanent cognitive damage, memory loss, personality changes and damage to the heart, for example. Many must also grapple with financial difficulties.
“In the past, we knew very little about what happened to cancer patients after treatment ended,” notes Julia Rowland, director of the National Cancer Institute’s Office of Cancer Survivorship. “We now know that cancer has the capacity to affect all aspects of survivors’ lives,” she says, and have “a profound and lasting impact on their psychological and social health.”
The survivorship movement has its roots in pediatric oncology. Many long-term survivors of childhood cancers reach adulthood with disabilities ranging from neurological deficits and heart and lung damage to heightened risks for secondary cancers. The fear and uncertainty, and feelings of being out of step with or ostracized by peers, frequently have taken a heavy toll, too, in the form of depression and anxiety. A 2016 study of childhood survivors of brain cancer, to cite one example, found they not only had increased rates of stroke and hearing difficulties but also were at high risk of impaired academic skills and unemployment, and were less apt to live independently.
Doctors have worked hard to minimize these risks. “We had to figure out how to cure them without ruining their lives,” says Dr. Jacqueline Casillas, director of the Pediatric, Adolescent and Young Adult Survivorship Program at UCLA’s Jonsson Comprehensive Cancer Center and medical director of the cancer center at Miller Children’s & Women’s Hospital in Long Beach. Both hospitals provide comprehensive medical and psychosocial evaluations, and the staff works with young survivors to help them find the best support programs in their communities and reintegrate back into the world. There are now more than 150 pediatric survivorship programs across the U.S. and Canada, and many follow children into adulthood, addressing their unique issues such as dating, fertility and employment concerns. “Patients tell me all the time ‘I look the same on the outside, but I feel different on the inside,'” Casilla says. “It’s critical to connect them with different programs that can normalize their experiences.”
The trend toward devising hospital-based programs for adults gained momentum after a 2005 Institute of Medicine report urged that all cancer patients get a formal ongoing care plan. But the real push came in 2012. That’s when the Commission on Cancer, an initiative of the American College of Surgeons that recognizes programs providing high-quality patient-centered care, mandated a comprehensive after-treatment plan to gain the group’s accreditation. The plans must include surveillance strategies, evaluations for health problems stemming from treatment, and recommendations for dealing with other issues. “Programs were slowly being implemented, but there was no real traction on this until the commission made this a standard,” says Dr. Patricia Ganz, director of the Patients and Survivors Program at UCLA.
The Livestrong Foundation, a Texas-based cancer charity, has designated several cancer centers as Survivorship Centers of Excellence: Memorial Sloan-Kettering in New York, Penn, UCLA, Ohio State University, Boston’s Dana-Farber Cancer Institute, the Fred Hutchinson Cancer Research Center in Seattle and the University of North Carolina Lineberger Comprehensive Cancer Center. Such major centers that draw patients from all over may refer them to resources at the center or use a simple consultative model for those who don’t live close by: Patients get a care plan and work with a nurse navigator to find resources that meet their needs in their own community.
At UNC, for example, patients fill out a distress screener to uncover their most pressing issues and can attend classes over a four-week period to help them transition. They get access to nutrition and exercise programs, along with personal trainers, on campus or in their local areas. “As an institution, we cover the whole state,” says Deborah Mayer, director of cancer survivorship. “Our job is to figure out what is available where the patient lives.”
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Similarly, Ganz does extensive evaluations of UCLA patients’ physical activity, nutrition and mental outlook and creates a plan that includes referral to a genetic counselor for input about the risk for secondary cancers and to local support groups. When they’re at UCLA, they can be seen for counseling and consult a nutritionist. “We make both institutional and community referrals,” Ganz says.
“This is a very difficult journey,” says Dikla Benzeevi of Los Angeles, who has been battling advanced breast cancer for 15 years. Having a place where she can connect with other survivors provides “great comfort,” she says. Diagnosed at 32, Benzeevi has undergone years of harrowing treatments at UCLA that included five months in a back brace after a spinal tumor had eaten away a vertebra. “That was a very scary time,” Benzeevi recalls. Her support group at UCLA has helped her cope over the years with everything from weight gain and “emotional chaos” to dealing with stomach cramps and nausea and finding a great wig.
The survivorship clinic at Ohio State University’s cancer center (known as OSUCCC–James) offers a broad range of on- and off-site services geared to both survivors and their families, including financial, spiritual, genetic and nutritional counseling; yoga and tai chi; massage therapy; more than a dozen support groups; and vocational rehabilitation and employment assistance. The clinic even sponsors monthly lunch-and-learn workshops in which patients are educated about nutrition and go grocery shopping with a dietitian. “It’s a real paradigm shift,” says Dr. Maryam Lustberg, a medical oncologist at OSUCCC–James.
Smaller community hospitals are committing to serve survivors, too. “We have to be focused not just on medical treatment but on their recovery and on a holistic approach to their lives,” says Dr. Randall Oyer, medical director of the oncology program at Lancaster General Hospital in Pennsylvania, which uses a combination of on-site nutritional counselors and support groups and such community resources as exercise programs at the local YMCA to customize care plans for patients and families.
For Rob Wood, 61, who has had surgery twice for colon cancer and thyroid cancer and is now in remission, the survivorship program at OSUCCC–James promises to be a huge help as he adjusts to being “a member of a club that I didn’t ask to join.” A professor and administrator at a small university in Columbus, Ohio, Wood has gained more than 60 pounds without a properly functioning thyroid, weight he hasn’t been able to shed even though he now takes thyroid supplements. He hopes to get encouragement and lose a few pounds, and that peer counseling will eventually help him “feel better and be more positive.” In fact, he thinks he might become a peer mentor himself.
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