By Kathy LaTour

Brenda Murray’s plastic surgeon recommended she talk to someone after her diagnosis of stage II breast cancer in 1990. So Murray‚ 46 at the time‚ called Bobbi de Cordova–Hanks‚ a breast cancer survivor and leader of a local support group called Bosom Buddies.

“He wasn’t really recommending a support group‚ “Murray says. “He just had the good sense to know I needed to talk to someone who had been where I was.”

Murray began attending the Bosom Buddies support group facilitated by de Cordova–Hanks as a program of the Women’s Center of Jacksonville‚ Florida. She recalls hearing at the time of her diagnosis what were then the new statistics about support groups extending the life of women with metastatic breast cancer‚ which had just been released by David Spiegel‚ MD‚ a psychiatrist at Stanford University School of Medicine in Stanford‚ California.

“I am a firm believer in support groups‚” Murray says. “I believe in the mind–body connection. No matter what you are fighting‚ you have to have support. It’s great to have a wonderful family‚ but that’s not enough. You need support from someone who has been down that road.”

Today the medical community is looking at a large study that refutes what Dr. Spiegel found. But whether or not attending support groups keeps women alive longer seems to be less and less the issue. Indeed‚ while Murray says the information Dr. Spiegel provided may have helped her decide to attend a support group‚ the fact that his findings are now being challenged certainly won’t change her mind about her twice–a–month commitment.

“We are a family‚” she says of the 10–15 members who meet twice a month for two hours. “Besides‚ it’s the Tinker Bell thing for me: I believe. I believe.”

Spiegel et al. vs. Goodwin et al.
Dr. Spiegel’s results‚ which were released in the journal The Lancet in 1989‚ compared two groups of women with metastatic breast cancer (cancer that has spread to another organ or location outside the breast). In his study‚ Dr. Spiegel randomized the women into two groups‚ one of which met on a regular basis to talk about their feelings. The other group did not attend support sessions.
“Supportive–expressive group therapy” encourages participants to talk about how they are feeling‚ including fear‚ emotional issues‚ and family stresses‚ basically the whole gamut of concerns wrought by a cancer diagnosis. The group gathers on a regular basis with a trained therapist.

Dr. Spiegel’s results showed that the women in the support group lived longer. It was big news in the medical community. Someone had finally shown in a controlled study that there was efficacy in the “mind-body” arena. Since the search for the drugs that will extend life is a constant research challenge‚ Dr. Spiegel’s results were of great interest to a medical community that needed credible study results before it could justify recommending support groups—indeed‚ assisting in the development of and supporting attendance at such programs in their institutions.

At the time such “psychosocial support” was not a standard offering on the part of most physicians‚ who either didn’t want to encourage their patients to sit around talking with other women because of their fear of misinformation or because they thought it would be damaging to their patients to talk about dying and other fears.

A New Era of Psychosocial Therapy
The ’90s saw a new understanding and acceptance of the role of psychosocial support for cancer‚ including not only support groups but also more individual psychotherapy and counseling as well as complementary interventions such as art therapy‚ journaling‚ music therapy‚ and meditation to name a few.

Psychoneuroimmunologists‚ who combine neurology and psychology‚ began studying mind–body issues. Support groups sprang up around the country‚ as did new organizations designed to assist with cancer patients’ emotional and spiritual journeys and those of their families. The explosion of mind-body medicine‚ as it was called‚ brought with it those who said it was all mind over matter and those who said there was no connection between the emotional state of the patient and the way in which he or she would respond to cancer—it was all physiological.

The reality‚ researchers now accept‚ is somewhere in the middle. Research in areas such as neurology‚ immunology‚ and psycho-oncology began to report connections between cancer‚ treatment response‚ and areas such as stress. Cancer patients began to ask for medical care that went beyond the physiological to the psychological and social. Whether it was important to physicians‚ mind–body had become increasingly important to patients and their families‚ who‚ for the first time were being told that they too were a part of the journey and needed their own support system.

Support groups stayed at the middle of the maelstrom‚ with new studies during the ’90s that either supported or challenged Dr. Spiegel’s findings that support group involvement for women with metastatic breast cancer would extend life.

The Newest Findings
Recently‚ a new trial‚ the largest to date‚ conducted by Pamela J. Goodwin‚ MD‚ a medical oncologist at Mount Sinai Hospital‚ University of Toronto‚ Canada‚ shows again that support groups don’t prolong life. The study made headlines in the cancer community not only for what it didn’t prove‚ but for its other conclusions. Quality–of–life issues‚ which many psychosocial providers say should be the focus of such studies‚ were included in Dr. Goodwin’s study with some important results.

Dr. Goodwin concluded that while group therapy does not prolong survival in women with metastatic breast cancer‚ it does improve “mood and the perception of pain‚ particularly in women who are initially more distressed.”

Jimmie C. Holland‚ MD‚ chair of the Department of Psychiatry & Behavioral Sciences and the Wayne E. Chapman Chair of Psychiatric Oncology at Memorial Sloan–Kettering Cancer Center in New York‚ says Dr. Goodwin’s “excellent‚ well–controlled study”addresses the complications of looking only at extending life when other issues related to the quality of life are extremely significant.

“When studied more deeply‚ people want to live both as long as they can and as well as they can‚” Dr. Holland says.

With the results of Dr. Goodwin’s study‚ Dr. Holland says she also believes that there in now adequate evidence that support groups do not extend life‚ pointing out that the two studies that have shown support groups extend life were small‚ and many people were concerned the data were not strong enough.

“It has taken a while to get studies that show that we don’t extend life with support groups‚ but we surely do improve the quality of life‚” Dr. Holland says.

Dr. Holland says such findings are connected to survival in that women who are very depressed might not go for treatment‚ which will have an impact on survival. Indeed‚ Dr. Goodwin’s results about quality of life for women in support groups showed women in supportive–expressive therapy had “greater improvement in psychological symptoms and reported less pain than the women in the control group.”

Identifying Psychosocial Support
Those involved in breast cancer research and advocacy responded to Dr. Goodwin’s study by stressing that support remains a very important part of the breast cancer journey for all women. Both the Susan G. Komen Foundation and the National Alliance of Breast Cancer Organizations (NABCO) say the findings should in no way influence women seeking support or physicians suggesting groups.

In a way‚ Dr. Holland says‚ options for psychosocial care should expand as a result of the study‚ and perhaps some of the “tyranny of support groups” will be lessened. “There is no ´one size fits all´ therapy type for any cancer patient. Because of Spiegel’s work‚ the idea of support group has been pushed to the limit. Some people don’t like support groups; it makes them feel worse. You can now find one–on–one support‚ yoga‚ music therapy‚ art. There is something for everyone and options for using any of these that fit your psyche.”

The most important thing‚ says Dr. Holland‚ is getting support and being sure it fits you. “If you think about it‚ the psychological component is present in every encounter with every doctor‚ including every type of cancer and every stage of the disease‚” she says. “Chemotherapy is only for a part of the time. Radiation is only for a part of the time. Dealing with the emotional side is a critical and integral part of what they are going through. No single thing is more important than giving attention to this.”

For physicians‚ psychological assessment can be difficult‚ she say‚ because if the doctor suggests the patient get psychiatric help‚ the patient might get angry. So the physician‚ worried about opening Pandora’s Box‚ doesn’t ask. And the patient‚ who is trying to be good and doesn’t want to mention mental distress—doesn’t tell. “It’s don’t ask‚ don’t tell‚” she says.

Dr. Holland says that at Memorial Sloan–Kettering and a number of other cancer centers‚ efforts are under way to find a rapid way to determine which patients are distressed‚ using a single scale such as asking‚ “How distressed are you on a scale of 1 to 10?”and then asking what is causing the distress.
“With this information‚ the nurse can say‚ ‘You need to see a social worker‚ mental health worker‚ or chaplain‚’” Dr. Holland says. “A good program is one that triages quickly a patient to the right kind of support all within the same setting that the cancer treatment is given.”

If the Group Fits
De Cordova–Hanks says it is information that drives many women to group‚ just as it drove her in 1986 with her own diagnosis at age 50.

“The first thing I did when I realized I was about to begin an arduous cancer journey filled with twists and turns‚ was to look for a support group. I knew nothing about breast cancer. All I knew was that I needed to find others who had been there before me.”

Today‚ de Cordova–Hanks facilitates three Bosom Buddies groups‚ one in Jacksonville and the other two at the “beaches” communities just outside the city. Both meet for two hours‚ twice a month and have a standard format.

“We meet and greet and then‚ if there are new members‚ everyone introduces herself.”

From there‚ de Cordova–Hanks says‚ the needs of the group are addressed. Those who want to discuss an issue do‚ and those who don’t are supported.
The new findings about support groups‚ de Cordova–Hanks says will have little bearing on the weekly meetings of Bosom Buddies.