Susan’s Story

For a couple of hours each month, Susan Ruffini isn’t the only one in the room with a chronic, debilitating condition. Susan is just Susan — able to share her hopes, fears, questions, and triumphs with a group of her peers.

Susan has lymphedema, a lifelong, uncomfortable, visible swelling typically seen in the arms or legs that can develop after cancer treatment. The 60-year-old surgical coordinator, wife, and mother was diagnosed in 2006 after undergoing treatment for breast cancer at Memorial Sloan Kettering Commack.

Frustrated but undeterred by her diagnosis, Susan looked for opportunities to continue the healing she began at MSK. Unbeknownst to her, another MSK patient was having the same difficulties. In response, MSK Commack started a support group for women with lymphedema.

The group, co-led by physical therapist Debbie Mattera and social worker Karen Hartman, officially began in 2009. Since then, members have met monthly to discuss body-image concerns, offhand comments from well-meaning family and friends, and overall strategies for coping with a chronic condition. There are participants who, like Susan, have been there from the beginning, but the group often finds itself welcoming new contributors.

“When we are in that room together, all our protective shields and walls come down and we become one with each other, laughing, listening, crying, and living together,” Susan says.

Help for a Unique Population

March is Lymphedema Awareness Month, and though the condition affects up to 10 million Americans, many people are unfamiliar with it. As an oncology social worker, Ms. Hartman was aware of the ailment, but the group provided a new way to offer support to Susan, one of her patients.

“Susan always has been, to me, one of the most insightful and thoughtful people when it comes to her diagnosis,” Ms. Hartman says. “She knew that she needed support and she was marshaling it.”

With two group leaders, there is room for various topics of discussion.

“I try to bring new information to the group,” says Ms. Mattera, who shares therapeutic advice on exercise, bandaging, garments, and lifestyle modifications. “Lymphedema is uncomfortable and chronic. Anybody with a chronic illness really benefits from the support.”

Ms. Hartman’s function is a little bit different, as she focuses on emotional support.

“My role is not to tell people how to feel or to give solid answers, but to give them space to talk openly and to validate each other,” says Ms. Hartman. “The solidarity is a huge part of it.”

Continuing Her Journey at MSK

The group is just the latest way Susan is bonding with her MSK family. She and her sister have both worked at MSK, and her mother and father were also cared for at MSK Commack. Susan and her mother were even able to have chemotherapy appointments together.

“We were on the same schedule and would sit next to each other,” Susan remembers. “It was actually a pretty nice social event.”

When Susan’s mother passed away from metastatic colon cancer, she was astounded by the compassion she received from MSK staff. One doctor even called her after seeing her mother’s obituary in the paper. She knew the people she met at MSK would continue to play a formative role in her life.

“I wish I could yell from the rooftops about how much these doctors care,” she says.

A Happy Anniversary

It’s been ten years since Susan was deemed cancer free. In November, for the milestone anniversary, she wanted to mark the occasion in a big way. When she was asked to speak at the grand re-opening event for MSK Commack, she couldn’t think of a more fitting opportunity. Susan spoke to a packed crowd about her experiences with breast cancer, lymphedema, and her support group.

“I don’t believe in coincidences,” she says, “I believe everything that happens does so for a reason. I said I wanted to do something significant, and what better way than this?”