Experts weigh in on developing standards for cancer survivorship care.
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
> Immunizations and prevention of infections
> 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.
We want to ensure that providers bring up important issues and give them evidence-based ways to assess and address them. I think these guidelines are an incredible start.
Friedman says the teams that developed the assessments and intervention documents brought their ideas from the conference room into the clinic and then back again during the yearlong process. “This was iterative. I’d bring ideas back, ask four or five people to tell me what worked and what didn’t,” Friedman says.
It’s difficult to predict how quickly the new guidelines will be adopted by cancer centers around the country and by insurance companies. Other NCCN guidelines are now widely used in clinical settings and insurance coverage decisions, McClure says. But the survivorship guidelines are different, requiring cancer centers to consider training and hiring people.
“It doesn’t have to take a lot of resources,” Ganz says. “It requires identifying people who are interested and motivated in providing this kind of care.” That means tapping into the interests of a sexual therapist willing to talk with survivors about sexual health, or a cardiologist who can get up to speed on the heart issues that some survivors might face from cardiotoxic chemotherapy.
Another incentive for adopting new survivorship guidelines came from the American College of Surgeons’ Commission on Cancer, which accredits more than 1,500 hospitals. The organization added implementing survivorship care plans to its requirement for receiving and maintaining accreditation, and hospitals have until next year to comply.
Kara Noyes, a 30-year-old survivor of osteosarcoma who now attends the Seattle Cancer Care Alliance Survivorship Clinic at the Fred Hutchinson Cancer Research Center, says she sometimes has felt guilty about asking for more help to deal with ongoing issues, such as chronic pain and muscle weakness. She wore high-heeled shoes for two years because letting her heels strike ground was painful. “I guess I felt like I had already taken enough resources,” she adds. “And I didn’t realize there was anything to be done about it.”
At age 14, she received a diagnosis of osteosarcoma of the spine. After a year of intense chemotherapy and radiation, followed by five years of monitoring, she was done. “I really liked my oncologist and stayed in touch for many years, but I felt dropped by the hospital. There was no place for me to go anymore,” Noyes says.
Patients and survivors should discuss any follow-up tests that might be needed with their primary care physician.
While attending a fundraising event for leukemia and lymphoma research, Noyes visited a booth for the Fred Hutchinson survivorship program. She picked up a flyer, followed up with a phone call and was admitted to the program.
Soon, program staff members gathered Noyes’ records from previous doctors and summarized her diagnosis and treatments on a single page, “so I can share it with all my providers,” Noyes explains. By 2015, the Commission on Cancer will require such treatment summaries of all cancer centers seeking accreditation.
Then Noyes received assessments focused on risk factors, given her treatment history. A bone density scan, for example, revealed she had bone thinning, which can result from radiation and medical therapies. Now, she takes vitamin D and calcium supplements and does regular weight-bearing exercises, getting monthly guidance from a trainer.
Other patients have stumbled into survivorship programs. Eleven years ago, Mary-Talmage Rada received a diagnosis of stage 3 ovarian cancer and underwent treatment. Recently, her oncologist told the 43-year-old Lafayette, Colo., resident that she didn’t need to return. “I felt blindsided,” Rada says. “I thought, ‘I’m not ready for this.’”
Toward the end of the appointment, however, the oncologist examined Rada’s breasts. Feeling something suspicious, the oncologist referred Rada to a breast cancer specialist. At the breast cancer center a few days later, Rada learned she did not have breast cancer, but because she was a cancer survivor, she could participate in the center’s survivorship program, even though it was designed for survivors of breast cancer.
That doesn’t surprise McClure. “Breast cancer tends to be on the leading edge in cancer care,” she says.
Karen Syrjala and Scott Baker, codirectors of the survivorship program at Fred Hutchinson, say they’ve been privileged to offer services to all survivors, regardless of where they were treated. Both served on the NCCN survivorship panel, along with Friedman. And Syrjala says she hopes that the guidelines will do two key things: guide the regular care practices of oncologists and cancer centers across the country and determine coverage decisions by health insurance companies.
The survivorship guidelines are based on scientific evidence of effectiveness, as well as widely accepted professional understanding, Syrjala says. But not all healthcare providers understand the challenges unique to survivors, such as cognitive dysfunction and sexual issues, nor do they take the time needed to deal with them.
Check in, even if it’s just once every five years. And not only because we may need to tell you about a new risk we now understand, we may be able to tell you about a new solution.
When a healthcare provider avoids discussing sexual issues or fails to investigate sleep problems, survivors can be left with the mistaken impression that nothing can be done. Often, healthcare professionals sidestep delving into problems such as these because they know that even if they do uncover issues, they don’t have the proper resources to offer survivors.
Moving from guidelines to widespread implementation of survivorship support will be “a process,” Syrjala says. “First you release guidelines and make the oncology community aware,” she explains. “You publish them, and you talk and talk about them, especially in primary care settings.” Syrjala and her colleagues recently hosted a half-day workshop about the guidelines at a conference for nurse practitioners and nurses in Seattle, for example.
Survivors also bear some responsibility, however. They must try to understand which follow-up tests are needed, even in the absence of symptoms, and which tests are not recommended for their specific cancer or treatment.
New NCCN guidelines make clear that care for cancer patients doesn’t end when treatment ends.
In addition to drawing upon the expertise of staff members at Sloan- Kettering, Masters also values taking part in the cancer center’s support groups.
“We are all just really open and honest, which is what I and others need,” she says. “We have dealt with the big issues, like death. Look, everyone who has cancer is afraid of dying, but you need to address how to prepare for it, what to do.”
Friends did die, Masters says, and she continued to stay well. But her husband, who was known for his sense of humor, had a stroke a few years after her cancer surgery.
“I learned so much from the individuals in the Sloan-Kettering group. My husband and I were able to say things to each other that so needed to be said and to share some very special, funny moments together before he died.”
The moment she walks into the center, Masters says, people who know her ask how she’s doing. “They are an extended family that offers continual support and care, unlike centers that treat you and send you off to deal elsewhere with any issue other than your cancer.”
Masters takes a train into the city to visit old friends, as well as those she knows at Sloan-Kettering.
That’s important, Baker says. He urges survivors to stay in touch with staff members at his survivorship clinic, even if it’s only to update an address. “In 10 years, we’re going to know things that we don’t know now,” he says. “So, check in, even if it’s just once every five years. And not only because we may need to tell you about a new risk we now understand, we may be able to tell you about a new solution.”