AFTER GRADUATING FROM YALE LAW SCHOOL IN 2009, SEUN ADEBIYI MOVED TO SALT LAKE CITY AND STARTED WORKING AT THE INVESTMENT BANK GOLDMAN SACHS. At night, he raced headfirst on a sled at 80 miles per hour down a frozen skeleton track, training to become the first Nigerian to compete in the Winter Olympics. But training for the Games was put on hold when he was diagnosed with cancer—and not just one type.
One was T-cell lymphoblastic lymphoma; the other was stem cell leukemia. He needed a stem cell transplant, but the scarcity of black donors meant little chance of finding a match.
“There was a period of free fall when I didn’t know which way was up,” Adebiyi, now 29, says. “I kept getting more and more bad news.”
Adebiyi was in distress: a catchall word encompassing the emotional, psychological, social or spiritual blow that may be brought on by cancer. Distress may be caused by practical needs—not having transportation to the cancer clinic, not being able to work—or by the sadness and anxiety from being dealt a life-changing diagnosis. What is certain is that distress has not been a widespread concern in cancer care across the country. A survey of 15 cancer centers just a few years ago found that only three routinely screened every patient for distress, according to a 2007 study in the
Journal of the National Comprehensive Cancer Network.
But that’s now changing.
Starting in 2015, distress screening will be required at the more than 1,500 hospitals accredited by the American College of Surgeons’ Commission on Cancer, a consortium of professional organizations that sets standards for quality cancer care. Some major cancer centers are already ahead: M. D. Anderson Cancer Center in Houston and Dana-Farber Cancer Institute in Boston routinely screen patients for signs they’re becoming overly frayed by their diagnosis.
“Oncology care is more than just providing the right diagnostic maneuvers, surgery, radiation and systemic therapy,” says Stephen Edge, who chairs the Commission on Cancer and is a breast surgeon at Roswell Park Cancer Institute in Buffalo, N.Y. “Care entails recognizing the impact cancer has on the individual.”
Identifying distress has come a long way from doctors halfheartedly asking patients, “You’re not depressed, are you?” That kind of tiptoeing physician attitude was not uncommon until recently, says Jimmie Holland, the chair of psychiatric oncology at Memorial Sloan-Kettering Cancer Center in New York City. So in the 1990s, she did something about it.
Holland figured that if doctors had a quick way to measure a patient’s distress level, maybe it would be the conversation starter to get patients the help they need. Out of that idea came the so-called Distress Thermometer. Developed in 1997, it posed a simple question to patients, yet one that was revolutionary merely because it had never been a standard component of cancer care: On a scale of 0 to 10, how distressed have you been during the past week? Holland says someone who scores below a 4 likely needs no help; those who score higher should be asked additional questions to identify their specific problems and the type of support they need.
In 1999, the National Comprehensive Cancer Network, an alliance of the country’s top cancer centers, included the Distress Thermometer in its distress management guidelines for health care providers. Every cancer patient experiences some level of distress, Holland says, and at least one-third experience significant distress at some time.
Distress screening got another boost in 2007 when the Institute of Medicine, the health arm of the nonprofit National Academies, released
Cancer Care for the Whole Patient, a report recommending that all cancer patients be provided care that recognizes and addresses their psychosocial needs. When that happens, the report says, patients are more motivated and able to complete treatment and they have the best clinical outcomes. Indeed, research has shown that cancer patients live longer when depression and other psychological roadblocks are effectively managed.
Managing distress also improves quality of life and the ability to cope with the physical and emotional demands of cancer and its treatment. “There are a lot of downstream ramifications of distress,” says psychologist Paul Jacobsen, of the Moffitt Cancer Center in Tampa, Fla. “People who are distressed tend to report more pain, more fatigue. Distressed patients who are parents may not be able to care for their children the way they want.”
Understand distress is normal. “Everyone has struggled on this journey,” says oncology social worker Lynn Waldmann, of M. D. Anderson Cancer Center. “The experience of distress and anxiety is not a failure on their part. It’s normal.”
Learn about your cancer and its treatment. Much of the anxiety at diagnosis comes from lack of knowledge. Make a list of questions before each appointment. If you don’t understand what your cancer care team is telling you, ask them to clarify or elaborate.
Speak up. Mental health still has a stigma attached to it, particularly among older people, says psychiatrist Jimmie Holland, of Memorial Sloan-Kettering Cancer Center. But “it takes more courage to talk about your problems and accept help than it does to avoid them,” she says.
Prioritize and focus. Work with a social worker to identify problems that need to be addressed immediately and issues that can wait. Then focus on finding solutions.
Pull from previous life experiences. How have you dealt with difficult times in the past? What gives you comfort and support? “Patients can pull on the strengths and coping strategies they already have, strategies that for the moment may have flitted away,” Waldmann says.
Eat right and exercise. “So much of your cancer experience is out of your hands and out of your control, but exercise and nutrition are a way patients can truly feel empowered and in control,” says Kim Thiboldeaux, the president and CEO of the Cancer Support Community, which offers exercise and nutrition classes.
Do things you enjoy. “Integrating a few pleasurable activities into the day can really help some people,” says psychologist Karen Fasciano, of Dana-Farber Cancer Institute. Even small things, like gardening or lunch with friends, can make people feel better.
Give people tasks. Lighten your load by letting other people help. Family and friends can help with meals, running errands and taking you to medical appointments.
Try new things. Even if a coping technique like relaxation or yoga is unfamiliar, give it a try. If it is not for you, that’s OK. You can try something else.
Learn how to adjust to the long-term effects of cancer treatment. Chemotherapy diminished Seun Adebiyi’s ability to remember and concentrate, so he learned how to modify his behavior with the help of a neuropsychologist and an occupational therapist. “I had to retrain myself and understand that I couldn’t operate the way I used to,” Adebiyi says. “If someone tells me something, I know I have to write it down or it’ll be gone.”
At M. D. Anderson, doctors and nurses started using the Distress Thermometer routinely in 2002 and have modified it over the years, says oncology social worker Lynn Waldmann. Patients first rate their distress at the initial appointment, then again at set intervals or whenever a change in the treatment plan occurs. “What the screening process has done for us is screen patients who would not otherwise have asked for help,” Waldmann says. No one needs to go through the stress of cancer alone, she adds.
Patient support organizations are also taking note. This year, the Cancer Support Community—the nonprofit union of the Wellness Community and Gilda’s Club—launched CancerSupportSource. Patients answer questions online, either at home or in the doctor’s office, and the program generates a personalized support care plan that links patients to the information and services they need. The doctor also gets a report that details the patient’s results. The tool is now being offered at a growing number of doctor’s offices and Cancer Support Community locations nationwide.
Cindy Dalen took the CancerSupportSource screening test in March 2012. She had been on a downward spiral since her stage II triple-negative breast cancer diagnosis last December. It felt like a bomb had been dropped on her, she says.
Dalen chose lumpectomy, but felt anxiety about whether it was the right decision. Then after surgery, she found out her planned course of radiation would have to wait. She had to have chemotherapy first. Needing chemotherapy “was my worst nightmare,” says Dalen, 52, of Park View, Iowa.
She tried her best to cope. But one day, as she made her way to her doctor’s office, she broke down. “I started bawling before I even got there,” Dalen says. That’s when a nurse came up and suggested she call the local Gilda’s Club.
“They asked me to do the screening,” Dalen says. “When I had the appointment [at Gilda’s Club] to go over it, they knew exactly what I needed to talk about.”
Laid out in front of Dalen were all the problems contributing to her distress and the resources to help her tackle them. Among them: She wasn’t eating and sleeping well, she often felt nervous and anxious, she was scared about the cancer coming back, and she worried about affording her co-pays. “Seeing what your issues are on paper makes it more real, makes it clearer what you need. Then you just do it,” Dalen says.
The first thing she did was join the support group at Gilda’s Club. “I thought I’d sit there and listen, but I started telling them everything right away,” Dalen says. She participated in the club’s cooking workshop and spa day, and she has penciled in a six-week survivor course after her treatment ends. She also takes a low-dose antidepressant to help manage her emotions. “I think about cancer every day, but I don’t have the anxiety.”
Coping With Distress
Psychologist Karen Fasciano says people who are diagnosed with cancer often need to develop new emotional survival skills that will bolster their resilience, before distress hits. “It’s important in a crisis to seek help from a mental health professional just to shore up your coping skills and think about ways of coping with new situations and intense emotions that you haven’t had in the past,” says Fasciano, the director of young adult mental health at Dana-Farber.
Among the coping strategies cancer patients might try are mindfulness meditation, progressive muscle relaxation, yoga and visualization. Mindfulness, defined as bringing attention and awareness to each moment and each thought in an impartial way, greatly improves anxiety, stress, depression and sexual problems in cancer patients, according to a review published in the journal
Psycho-Oncology in 2011. Some patients also benefit from medications to treat anxiety and depression.
For Adebiyi, a cord blood transplant put both of his cancers into remission. A Nigerian woman who gave birth in the U.S. had donated her baby’s umbilical cord blood, and the stem cells were a match.
But the heavy doses of chemotherapy and radiation that wiped out his bone marrow left him thin, weak and depressed. “I felt like a shell of my former self,” Adebiyi says. Chemotherapy caused short-term memory loss and difficulty concentrating. He was no longer able to work at the capacity he’d been used to all his life. “That had a lot of significance for me in terms of self-identity and self-worth. It was just too much to handle on my own,” he adds.
People to see
Oncology social workers, psychologists and psychiatrists are specially trained to provide support to cancer patients and their families, both during and after treatment. Ask to see a social worker on staff at your hospital. If your oncologist is in private practice, ask for a referral to a social worker at your doctor’s affiliated hospital.
Cancer patients are also a resource for each other. Imerman Angels
is an organization that connects patients, survivors and caregivers with a support buddy who has been through a similar cancer experience.
Places to go
The Cancer Support Community currently has
nationwide affiliates that provide a variety of services, including distress screening, treatment decision counseling, support groups, nutrition workshops and meditation and yoga classes.
The American Cancer Society provides
temporary housing for cancer patients and their caregivers who must travel far from home for treatment. And survivors wanting to improve their physical and emotional strength can take part in
Livestrong at the YMCA, a 12-week exercise program offered at select YMCAs in 25 states.
Websites to visit
Cancer Survivors Network is an online peer-support community of cancer patients, survivors, caregivers and loved ones. Free registration is required to participate. There are also communities focused on specific cancers, such as
Breastcancer.org, or types of patients, such as the young adult site
For patients distressed about how to manage cancer and work, there’s
Cancer and Careers. If the chores of everyday life become overwhelming,
Lotsa Helping Hands is a free service that allows a patient or caregiver to create an online community where family and friends can sign up for specific tasks. And the Patient Advocate Foundation provides financial support to insured patients who qualify for its
Co-Pay Relief Program. For additional resources, see “Diagnosis: Debt.”
Numbers to call
The American Psychosocial Oncology Society connects cancer patients and caregivers with counseling services in the community through its help line (866-276-7443). Callers to the Cancer Support Community’s Cancer Support Helpline (888-793-9355) can receive a modified version of the CancerSupportSource distress screening. CancerSupportSource is also available as a free mobile app.
Adebiyi, who was being treated at Memorial Sloan-Kettering, was introduced to Holland. Counseling and medication to manage his anxiety and cognition problems helped him get back on track.
He also set out to lessen the distress of other black cancer patients by starting the Bone Marrow Registry in Nigeria—Africa’s first accredited registry outside South Africa. He is now raising funds to start the first cord blood bank in Nigeria.
Today, he meditates and sees a counselor on occasion, all while training for the 2014 Winter Olympics in the skeleton. He is also not ashamed to admit he needed help. “It’s perfectly normal to talk to our oncologist about side effects we’re having on a physical level. It’s just as natural to talk to someone about the mental issues we’re having,” Adebiyi says. “It’s all part of the healing process.”
September 27, 2012