Cancer Symposium Addresses Long-Term Survivorship
The many issues of long-term cancer survivorship were addressed at the University of Wisconsin Paul P. Carbone Comprehensive Cancer Center's 6th annual symposium, Advances in Multidisciplinary Cancer Care. On October 19 at the Monona Terrace, cancer survivors and health care professionals alike addressed sexual health, exercise, Integrative Medicine, Cancer and the Nutrition Connection, as well as the broader need for wide-ranging survivorship care plans to help the growing numbers of people who are now living decades beyond treatment.
"We had no sense of future back then," Leigh said, addressing the Advances symposium. "We have made a huge difference in the direction we're going."
"Now, everybody can do something about survivorship, no matter what kind of community or program you're in," says Leigh, whose own cancer journey has included a second cancer diagnosis in 1991 (breast cancer), a term as president of the NCCS and decades of advocacy work for cancer survivorship.
After Treatment, Administering "A Dose of Reality"
Making the transition from treatment to being off therapy is "absolutely one of the scariest times in a survivor's journey," says Leigh. On the one hand, it's a celebration – when patients complete chemotherapy, their nurses and doctors might even throw them a graduation ceremony, complete with balloons and cake.
"Let's discuss what life is going to be like when you go off therapy," Leigh urges. "The challenge is how to do it in a way that's not going to scare the bejesus out of everybody."
According to Leigh and other speakers at the Advances symposium, that discussion should include support networks available to survivors, as well as critical information about the types of problems they may encounter immediately or well down the road.
Depending on their type of cancer and the treatments they endured, cancer survivors may be at risk for a constellation of complications and late effects, including:
- Premature menopause
- Heart and pulmonary problems
- Early aging
- Muscular damage due to prior radiation treatment
- Financial debt due to treatment and loss of time at work
- Compromised immune system and increased risk of infection
- Chronic illnesses and fatigue
- "Chemobrain" – a mild cognitive impairment linked to chemotherapy, in which a person is unable to concentrate and remember details about their everyday lives
In addition to this laundry list of complications, perhaps the biggest threat looming over cancer survivors is relapse, or developing another type of cancer.
From cancer treatment to the years beyond, James Cleary, MD said the essential question for health professionals is how to provide integrated support for people living with cancer.
"Much of what I think we're talking about is hope," said Dr. Cleary, an oncologist at the UW Carbone Cancer Center and director of palliative medicine. Quoting poet Robert Frost, Cleary added: "Hope does not lie in a way out, but in a way through."
"So how do we as medical professionals help them move along, and help them lose this fear of tomorrow?" Cleary asked.
What should survivorship care plans include?
To address such wide-ranging health and social needs, survivorship care planning for cancer patients should summarize several critical pieces of information, according to advocates for such planning and the Institute of Medicine (IOM). The IOM released its own 2005 report on the topic, From Cancer Patient to Cancer Survivor: Lost in Transition, which recommends the following elements for survivorship care plans:
- A description of the person's cancer type, treatments received and their potential consequences
- Specific information about the timing and content of recommended follow-up – including a schedule of screenings and tests to check for cancer recurrence
- Recommendations for preventive practices and maintaining overall health and well-being (e.g., smoking cessation and nutrition)
- Information on legal protections regarding employment and access to health insurance
- The availability of psychosocial services in the community
Some major insurers have begun examining the role survivorship care plans could ultimately play in health care, noted Houlihan.
In another Advances workshop, "Worlds Together or Worlds Apart: Can Survivorship Care Planning Survive Health Insurance?" other presenters warned of potential pitfalls in the process. The University of Wisconsin-Madison Center for Patient Partnerships' Peter Daly, PE and Meg Gaines, JD, LLM urged taking a cautious approach to developing long-term plans.
At its best, Gaines and Daly said, the care plan can avoid blunders and manage risks for cancer survivors, helping improve their quality of life. But at its worst, it could violate patient privacy. Also, insurers may view the plan as a commitment to a fixed path, using it as a basis for limiting care, they said.
"Be open-minded and creative. Survivorship is different things to different patients," Gaines and Daly concluded. "Be patient-focused. Survivorship care planning must first serve the patient – in its process and results."
Date Published: 11/06/2007