National Guidelines Aim to Make Life Better After Cancer

Experts weigh in on developing standards for cancer survivorship care.

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
In 2008, Marie Masters traveled to Memorial Sloan-Kettering Cancer Center in New York to seek a second opinion. A doctor had given her a diagnosis of lung cancer that a biopsy failed to confirm. But an imaging scan revealed a suspicious spot on her colon, which turned out to be malignant.

“I was so, so lucky,” says Masters, now 69 and living in White Plains, N.Y. “This could have grown on and on since I had no symptoms at all.”

Today, as far as can be determined, Masters is cancer-free. But she knows her risks, and she receives continuing guidance from the team at Sloan-Kettering on how to manage those risks and the stress that accompanies them.

“Cancer does have a tendency to come back,” she says. “Now I’m in a lung cancer prevention program and a colon cancer prevention program. I’ve been to workshops on how to meditate, how to eat right, how to exercise. These have been so beneficial to my health.”

Survivorship researchers and advocates are working to ensure that in the future, Masters’ experience will be routine.

Recently issued clinical treatment guidelines from the National Comprehensive Cancer Network (NCCN) make clear that care for cancer patients doesn’t end when treatment ends. Rather, healthcare providers are expected to help survivors understand long-term and late effects, including the risk of recurrence and second cancers. Follow-up treatment should include risk monitoring, discussion about healthy living practices and regular check-ins with survivors to ask them specifically about their anxiety level, pain, sleep patterns and ability to complete tasks requiring attention, among other issues.

Such issues can have a profound impact on survivors’ quality of life, says Debra Friedman, director of the survivorship program at the Vanderbilt-Ingram Cancer Center in Nashville, Tenn. Friedman served on the panel of experts that developed the NCCN survivorship guidelines.

She says survivors sometimes dismiss serious issues, because such challenges seem minor compared with surviving cancer itself. “They’ve been through a war and won that war,” Friedman says. Compared with what they’ve been through, fatigue, sexual dysfunction, an inability to get back to exercising and chemobrain seem like relatively minor issues that they’ll just have to live with, she adds.

If you had a toothache and you didn’t tell anyone about it, how would it resolve?

Survivors need to understand that since the guidelines are just that, they still need to advocate for better survivorship support, says Patricia Ganz, director of the UCL A-LIVESTRONG Survivorship Center of Excellence at the Jonsson Comprehensive Cancer Center in Los Angeles. And because not every doctor, nurse or cancer center will have the experience or ability to provide comprehensive survivorship care, patients must learn to ask for help when they need it. That might mean, for example, finding a survivorship care plan online, printing it out and bringing it to a doctor’s appointment for discussion—or arriving at appointments with prepared questions.

“If you had a toothache and you didn’t tell anyone about it, how would it resolve?” Ganz asks.

But they don’t need to. There are effective treatments for depression and anxiety, ways to deal with cognitive or attention challenges, and tools to assess the reasons for sleep problems or pain. And if treatment-related problems, such as bone loss, are caught early, there might be less long-term damage.

“We want to ensure that providers bring up important issues and give them evidence-based ways to assess and address them,” Friedman says. “I think these guidelines are an incredible start.”

The NCCN decided to take on the issue of survivorship two years ago, partly in recognition of a positive trend: More and more people survive cancer, says Joan McClure, senior vice president for clinical information and publications for the NCCN.

To develop the new guidelines, the NCCN engaged experts in oncology from throughout the country. During the course of a year, they split into working groups—one for pain, for example, another for sleep issues—and reviewed the scientific literature on how to assess survivors’ problems and intervene in a meaningful way. Focus areas included:

> Anxiety and depression

> Cognitive dysfunction

> Exercise

> Fatigue

> Immunizations and prevention of infections

> Pain

> Sexual dysfunction

> Sleep disorders

The guidelines were then developed to give oncologists, primary care doctors, nurses, social workers and other healthcare providers an easy-to-follow structure. At the first level, providers might consider asking a few simple questions.

To check for anxiety and depression, for example, the provider might ask:

> Do you often feel nervous or do you worry?

> Do you often feel sad or depressed?

> Have you lost interest in things you used to enjoy?

A “yes” answer would prompt the care provider to dig deeper, following with the more detailed assessments in the guidelines. Does the survivor mention irritability, fatigue and restlessness? Those symptoms might indicate general anxiety disorder, which has an array of treatment options. A pounding heart, dizziness and nausea might point toward a panic disorder.

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
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