Needs change, but long-term survivors still require care

There are more than 11 million cancer survivors currently living in the U.S., and that figure is expected to nearly double in the next decade. Sixty-four percent of adults diagnosed with cancer today will be alive in five years, and 75% of childhood cancer survivors will live for 10 years or more.

Survivor clinics to help these patients are needed, but establishing and operating enough clinics to support 11 million patients is a challenge, especially in the current economic climate. With hundreds of community cancer clinics having shut their doors over the last three years, remaining centers may shy away from adding a new program.

Survivor programs do not have to be a huge burden. In 2006, Patricia Ganz, MD, established the University of California, Los Angeles-Livestrong Survivorship Center of Excellence. The center is one of eight established by the Lance Armstrong Foundation. The foundation's funds have helped to develop programs at the comprehensive cancer center as well as in community-based programs. Each setting has a different model of care.

Today, the UCLA center is staffed by a psychologist, adult nurse practitioner, and pediatric oncologist specializing in the care of long-term childhood cancer survivors. Dr. Ganz spoke with Oncology News International about some of the key elements to keep in mind when establishing a survivorship program.

Dr. Ganz is the director of cancer prevention and control research at the Jonsson Comprehensive Cancer Center, UCLA. She is an American Cancer Society Clinical Research Professor.

Patient = survivor
Dr. Ganz said that ideally, all patients should have their initial treatment planned as if they are going to be a long-term survivor. For example, preserving fertility must be considered before treatment starts. Post-treatment, she recommends that every patient be given a survivorship care plan to serve as a coordination-of-care road map that details the person's cancer-related health history from diagnosis through treatment and describes potential late effects.

This care plan can help cancer survivors move more smoothly through through the healthcare system.

"We focus on the psychosocial first, doing a 'depression screener' to pick up people who are depressed, or even some who are suicidal," Dr. Ganz said. "Then we look at any late effects of cancer treatment: residual fatigue, cognitive problems, and weight gain, which is a big problem."

This care plan may also include recommendations for improving psychosocial well-being and referrals for counseling as appropriate for sexual difficulties or the need for genetic counseling.

The 2005 Institute of Medicine report on adult cancer survivors recommended that all cancer patients receive a summary of information critical to long-term care (see Table).

Long-term cancer care summary

• Diagnosis

• Treatment and potential treatmentrelated adverse events

• Timing and content of follow-up visits

• Tips on maintaining a healthy lifestyle

• Tips on cancer prevention

• Legal rights affecting employment and insurance

• Availability of psychological and support services

Keep primary care providers in the loop
One of the goals of a survivorship program is to fill the gap between oncologists and primary care providers.

Dr. Ganz said that studies have shown that the best follow-up care is provided when a cancer survivor shares care between cancer specialists and primary care providers. Building this bridge between cancer care and primary care is especially vital in childhood cancer survivors.

"Primary care providers form impressions about the cancer treatment experience on the basis of their familiarity with treating adults with cancer, but they are unlikely to know firsthand about the serious and often fatal complications that result from successfully treating childhood cancer,"

Dr. Ganz and colleagues wrote in an editorial on the large-scale Childhood Cancer Survivor Study (Ann Intern Med 152:465-466, 2010; J Clin Oncol 27:2207-2415, 2009).

"Because childhood cancer survivors are very adaptable and used to denying difficulties-wanting to be 'normal' like their peers-they may minimize their symptoms and fail to get the attention of their internists, thus receiving less help than they actually need," Dr. Ganz's group stated.

According to the Childhood Cancer Survivor Study, fewer than 20% of the survivors were being followed by an oncologist or at a cancer center. "Oncologists do a great job of seeing patients to see if the cancer has come back, but they kind of ignore these other things," she said. "If we can't do it, then we need to find other care providers who will." The staff at the Jonsson Center focus on coordinating care and developing plans that are sent to the patients, their primary care physicians, and any other provider and are archived in the patient's electronic medical record.

"We have interviewed primary care physicians receiving these, and they all were extremely grateful for having the patient's past treatments explained to them and getting guidance on how to follow them up," Dr. Ganz said. "We actually get a lot of referrals back from the primary care physicians, who want the survivors in their practices to have the benefit of consultation."

Breast cancer survivors
Breast cancer survivors account for 23% of the cancer survivors in the U.S. Their complex treatments often extend for prolonged periods, and late effects include infertility, menopausal symptoms, and fatigue.

Managing problems that arise after treatment is especially important for breast cancer survivors, Dr. Ganz said. These women are typically in their most productive years, raising children and working. Fatigue and cognitive problems can have a big effect on their lives.

USING MY RELIGION

Pastoral care can be an important element for survivorship and should not be ignored. "The vast majority of Americans consider religion to be an important part of their lives, and they want healthcare providers to address religious issues," advised Barbara Parker, MD, medical director for oncology services at Moores Cancer Center at the University of California, San Diego. "The medical team needs to be educated on the relationship of religious and spiritual issues in coping with illness and sustaining hope."

Source: American Society of Clinical Oncology (ASCO) 2010 educational session.

Both scientific and anecdotal studies have shown that exercise renders breast cancer patients better able to cope with late effects. A recent study in Cancer Nursing had breast cancer survivors reporting that a weekly Iyengar yoga class dramatically improved their sense of well-being and quality of life. "A lot of [the subjects] reported they like having classes solely for cancer survivors, especially breast cancer survivors," said lead author Amy Speed-Andrews, PhD, a research fellow at the University of Alberta in Canada (33:369-381, 2010).

A multicenter clinical trial is currently under way to examine the effects of weight loss and increased physical activity on quality of life for breast cancer survivors. Up to 30% of breast cancer survivors experience persistent anxiety or depression after completing treatment, according to principal investigator Cheryl Rock, PhD, a professor of family and preventive medicine at the University of California, San Diego. Documenting improvements in psychosocial and medical comorbidities during the trial could itself change the norms of clinical practice, she said.

"Up until now the message [to survivors] has been, 'Just be happy to be alive,'" Dr. Ganz said. "The challenge is how the medical healthcare system can do a better job of helping them."

Livestrong Care Plan powered by Penn Medicine’s Oncolink

Livestrong in partnership with the University of Pennsylvania’s School of Medicine in Philadelphia, has created a free website that allows patients and healthcare providers to create personalized survivorship care plans. Visit www.livestrongcareplan. org to complete the plan.

Livestrong Survivorship Centers of Excellence Network

The concept of extended cancer survival is relatively new and, as a result, the fi eld of addressing survivor needs is still a work-in-progress, said Ruth Rechis, PhD, director of research and evaluation at the Lance Armstrong Foundation. “As we learned from the IOM report, as well as through our work at Livestrong, cancer patients can get lost in the transition from cancer therapy to follow-up care.” Th e UCLA center is one of eight survivorship centers established by the Lance Armstrong Foundation. Each has been established at an NCIdesignated Comprehensive Cancer Center. Visit www.livestrong.org to learn more.

Journey Forward

Th e UCLA survivorship program, along with the National Coalition for Cancer Survivorship, has created a free online tool to help medical professionals develop custom care plans, based on the ASCO “Chemotherapy Treatment Summary templates and Surveillance Guidelines.” Visit www. journeyforward.org for more information. Wellpoint and Genentech are also site sponsors.