Last week, Harvard researchers reported in the New England Journal of Medicine that 28 percent of newly-diagnosed breast cancer patients turn to complementary therapies such as massage, herbs, relaxation techniques, and self-help groups – even though they had never used so-called alternative medicine before.
In fact, the women most likely to turn to such therapies, the researchers found, were the ones who suffered the most anxiety and depression in the first three months after diagnosis.The fact that so many patients feel they need to take their distress outside of the doctor’s office is a powerful statement, not only of how common these feelings are, but of how little faith patients seem to have that their doctors can help with the emotional side of illness.
It’s basically “don’t ask, don’t tell” in many oncology clinics, wrote Dr. Jimmie Holland, chair of the psychiatry and behavioral sciences department at Memorial Sloan-Kettering Cancer Center, in an editorial accompanying the new research.
It’s natural, of course, to feel upset and worried when faced with a cancer diagnosis. But studies show that at least a third of cancer patients go on to develop serious anxiety and depression. Even so, “under 10 percent, more like 5 percent, get any kind of counseling,” Holland added in a telephone inteview.
Doctors don’t ask about a patient’s emotional state because they’re often busy and patients don’t tell because “they don’t want to sound like wimps or like they’re not coping well.”
That’s a shame because evidence shows that when people with cancer get the emotional support they need, they do better – perhaps not in terms of survival, but at least in wellbeing.
“The vast majority of studies, probably 15 to 20, show that group interventions improve quality of life,” says Dr. David Spiegel, a Stanford University psychiatrist. He adds that a still-unpublished study done at his center and 10 others across the country shows that such interventions can yield a 40 percent reduction in mood problems among breast cancer patients.
Psychologist Ann Webster, director of the mind-body cancer program at the behavioral medicine clinic at Beth Israel Deaconess Medical Center in Boston, supports that idea.
Patients with many types of cancer attend her 10-week group sessions and they show “statistically significant reductions in anxiety and depression,” she says. In fact, her data suggest the improvements last years after the group sessions, which provide not just a chance to talk about feelings but specific coping methods like taking up yoga or eating a more nutritious diet.
Support groups can also help family members of cancer patients, in part by offering a chance to talk about “the fear of a loved one dying and not wanting to bring that up because they don’t want to put a black cloud [ on the patient] ,” says Phyllis Truesdell, a clinical social worker at the Wellness Community in Newton, which offers free support groups for cancer patients and separate groups for caregivers.
For patients themselves, she adds, groups are a place to “be honest about what you’re experiencing, the fear of dying, fear of pain, fear of leaving family and friends and not wanting to do that, not being ready.”
Joining a group with other cancer patients obviously does mean that you’ll encounter other people, some very sick, which can be frightening. But even when other people in a group die, things aren’t all bleak, says Truesdell.
Two weeks ago, one man in her family-members group reported that his wife was free of cancer. “Everybody could cheer, yet at the same time, there was a fellow whose wife had died. It’s all okay. It all gets spoken about, and cried about. That happens often, in every group – there’s laughter and tears.”
Carol Solomon, a 51-year old Framingham recreation therapist with ovarian cancer who has been in a Wellness Community group for about a year, can vouch for that.
“We had four deaths in our group,” she says. “It was devastating. It was like losing a family member. But to have known that person and learned from their strengths is very helpful.”
Fran Doocey, a 42-year old library assistant from Roslindale who also has ovarian cancer and is in that group, agrees, noting that the different outcomes in and of themselves offer perspective. “People in the group have died. But some people have left because they’re fine.”
“Whether your feelings are up or down, they understand. They never get tired of listening,” says Diane Rund, 48, a school secretary in Ashland who has breast cancer and is in the group, too.
What everyone would really like, of course, is solid evidence that this kind of emotional support doesn’t just make people feel better but helps prolong life, too.
A decade ago, psychiatrist Spiegel seemed to prove this when he published data on advanced breast cancer patients who attended a support group. They lived for 36 months, twice as long as those who did not attend such a group. Similarly, in 1993, Dr. Fawzy I. Fawzy, a UCLA psychiatrist, found that people with malignant melanoma who participated in a group lived longer than those who didn’t.
The hypothesis is appealing – that emotional support can reduce stress and improve immune function and perhaps thereby, combat cancer.
But so far, except for these tantalizing tidbits, no one has has been able to link behavioral interventions with changes in immune function that truly alter health outcomes, says Ronald Glaser, an immunologist at Ohio State University. Indeed, a number of researchers have tried to replicate the findings that emotional support prolongs life – and failed.
Even so, Glaser says, it makes sense for people with cancer to try support groups and other behavioral interventions “because (A), a patient feels better, (B) it could have a biolocical effect and (C), you don’t lose your hair – it’s not toxic.”
Not everyone, of course, benefits from or even wants to talk about cancer with other people. Indeed, patients tend to “select their therapies” according to what suits them, says Barrie R. Cassileth, a psychologist and medical sociologist who heads the integrative medicine department at Sloan-Kettering in New York.
But for many patients, she adds, a key ingredient of complementary therapy may simply be enhancing a patient’s sense of control.
The bottom line, says Hester Hill, chief oncology social worker at Beth Israel Deaconess Medical Center in Boston, is that for anyone with cancer, “clearly, the first goal is to save someone’s life. But almost equal attention needs to be paid to the quality of the life we are saving.”
For more information
For more information on coping with the emotional distress of cancer, you may contact:
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The Wellness Community in Newton, 617-332-1919 begin_of_the_skype_highlighting 617-332-1919 end_of_the_skype_highlighting or on the web, www.wellnesscommunity.org. Or nationally, 1-888-793-9355 begin_of_the_skype_highlighting 1-888-793-9355 end_of_the_skype_highlighting..
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The Behavioral Medicine Clinic at Beth Israel Deaconess Medical Center in Boston, 617-632-9530 begin_of_the_skype_highlighting 617-632-9530 end_of_the_skype_highlighting.
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The American Cancer Society, 1-800-227-2345 begin_of_the_skype_highlighting 1-800-227-2345 end_of_the_skype_highlighting.
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Zakim’s brave search for what works
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It would be hard to find anyone who has fought cancer more passionately, or with more open-mindedness about complementary therapies, than Leonard Zakim, 45, the executive director of the New England regional office of the Anti-Defamation League.
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Zakim was diagnosed in 1995 with multiple myeloma, a type of cancer that originates in the bone marrow. He’s been through a grueling bone marrow transplant and fought his way back from life-threatening relapses several times since.
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He uses acupuncture for what he describes as “incredible pain.” He exercises when and as much as he can. He does massage and meditation. He keeps setting new goals – like going to Dublin last month for a Bruce Springsteen concert despite a recent round of debilitating treatments and a series of infections all spring.
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As co-chair of the Complementary Therapies Task Force at the Dana-Farber Cancer Institute, he’s become a vigorous advocate for cancer patients using everything from support groups to acupuncture and herbs in addition to standard treatments.
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He’s also become a believer in the power of psychological therapy – individual counseling and support groups – to offset the despair that might otherwise be crippling.
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One-on-one therapy helps, he says, because “you have no responsibility to that person. You don’t have to be strong. You don’t have to be afraid to be weak. It’s not like being with a family member who is so tied to your getting well and surviving that they don’t want to talk about dying and the times you feel, ‘I’m just just so tired of being sick and tired.’ “
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Support groups, like the one he’s in that consists of other people who’ve been through bone marrow and stem cell transplants, help in a different way.
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“These are folks who have been through everything you’ve been through. So when you relapse, which I’ve done a number of times, you go to the group. . .and they understand.”
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Zakim recalls his first relapse. “I was crushed, I was in tears. I went to the meeting. It wasn’t like I felt better, but people said, ‘You know, it’s terrible. But you come out of it.’ “
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He adds, “Your doctors, with all due respect, are supposed to put you through this. . .but the rest of it is such a struggle.” Cancer treatment and the constant stress of tests, waiting for test results and not knowing how you’ll feel from one day to the next, “this stuff really batters you,” he says.