Lean on me

Patients and families support one another
By Christine Cleary

Support group member Nancy Kinchla, who has been receiving treatment for a cancer of the appendix known as signet ring cell, shares a generous hug with Betty Lee after a recent meeting. Lee's husband, Doug Wong, (left) has cholangiocarcinoma, a very rare cancer of the bile duct.

"Who am I without cancer?" A tough question for a group of patients with various types of gastrointestinal (GI) cancer, especially when it seems the disease has taken over their lives. Upon reflection, however, they often realize that much of the self is still intact: parent, partner, musician, consultant; witty, generous, outgoing, shy.

"When their thoughts go deeper, they see that many dimensions of life have not changed, and some have been enhanced," observes facilitator Bruce MacDonald, LICSW. "They might say, 'I'm more aware of the love in my life.'

"My overall goal is to help people focus on living, and not be defined by their disease or treatment," MacDonald adds. "Here, in the support group, they are not 'patients.' That's not who they are."

This monthly Thursday night gathering illustrates a profound belief that has guided Dana-Farber for 60 years: It is essential, when treating cancer, to consider and care for the whole person, not just the disease. "Reducing the burden of cancer requires both physical and emotional care because, for the patient, these aspects are intertwined," says Nancy Borstelmann, MPH, LICSW, director of Patient and Family Support Services for Dana-Farber/Brigham and Women's Cancer Center. "Comprehensive care must wrap around all facets of a person."

Dana-Farber's former president, David G. Nathan, MD, says it was the Institute's founder, Sidney Farber, MD, who came up with the concept of offering "total care" for cancer patients back in the 1940s. "He decided that all services for the patient and family – clinical care, nutrition, and counseling – should be provided in one place, by one team," recalls Nathan. Farber asked Antoinette Pieroni, the first full-time social worker for what was then called the Children's Cancer Research Foundation, to make rounds with the medical staff each morning and see every new patient in the clinic, a practice unheard of back then.

Years later, the Institute began offering support groups under the leadership of Cynthia Medeiros, LICSW, now director of Patient Care Services Administration at Dana-Farber. Today, dozens of gatherings are offered for adults, children, and families facing cancer.

The word "support" has various interpretations. For Borstelmann, it conjures up a warm and positive image. "To some, 'support' suggests dependence, but to others it means that someone will listen to you, bear witness to your experience, and create a space for you to express concerns," she explains.