Breast cancer: Support groups offer camaraderie, discussions

Last modified: Monday, October 28, 2013

During two years of treatment for cancer in both her breasts, which included a mastectomy, lumpectomy and reconstructive surgery, Allison Rebello has had a place to talk about her fears and listen in on and learn from experiences of other women affected by the disease.

Rebello, now 38, is one of a number of women who attend Cancer Connection’s weekly breast cancer support group in Northampton.

“What I am finding about breast cancer is it doesn’t come in a nice pretty little box. It is a continuum and it starts from the very first time you find a lump or get that phone call when the doctor says you have cancer,” said the Chicopee resident. “One of the great things about this group is that it’s ongoing and you can get support for everything you go through.”

Women diagnosed with breast cancer experience a range of emotions and face difficult questions, such as what kind of treatment to undergo and how to talk to family and friends about the disease, said Katherine Walsh, group facilitator at Cancer Connection, which offers education, peer support and therapies for people with all types of cancer.

“We have a culture of mutual support and respect and we want it to be a safe place for everyone,” she said. The support group is open to anyone at any stage of the disease and people can come as often or as little as they want, she said.

Safe place to vent, learn

A theme that emerges often in the group is that most of the women go from a caretaking role as mother or partner to being the one needing support, Walsh said.

“You’re often thinking of other people’s needs and this support group can be a place where they could really think and talk about their own needs and support one another and get those met,” she said.

While the meeting space at Cancer Connection’s office at 41 Locust St. has the feel of a living room with comfortable chairs, couches and a coffee table, the talk is mostly serious and there are important ground rules. Participants must keep confidential the names of other members and they are asked not to give advice to others unless asked, Walsh said.

“We appreciate that every person has their own unique way of coping with this and people can learn a lot from one another’s experiences, so we prefer they say something like ‘I found it helpful to do this’ rather than ‘you should do that,’” she said.

The psychological, physical and emotional consequences of having breast cancer are sometimes difficult to convey to those who never had it, said Karen Lipton, 56, of Whately, who was diagnosed with breast cancer about two years ago. She has undergone a lumpectomy and six months of radiation.

“Being in this group has allowed me to let my guard down and share exactly what was going on with me,” she said. “The group was able to help me at the beginning to feel like I wasn’t alone in this journey and know that there were people there to support me and I could share whatever I wanted.”

Several members of Lipton’s immediate and extended families have had breast cancer, including her mother. Lipton found the meetings helpful by sharing her concerns, especially when she had to tell her college-age daughter about what she was facing.

“She was in her first semester of college so that presented some challenges. What do I tell her or what do I not tell her and how life-threatening it might be,” she said. “I am certainly concerned for her future as well.”

Beverly Herbert of Holyoke is a two-time breast cancer survivor who didn’t join a support group when she was diagnosed 23 years ago. But last September, when she got the news that the cancer had come back in the same breast, she found she needed the support.

“This time around was very scary. I had a mastectomy and was grieving losing a part of my body,” she said.

What Herbert says she likes about this group is there are so many varying experiences and she had met someone going through the exact same thing.

“This group calms me down. If I am wondering about something I can ask questions and I know it won’t go any further,” said the professional fundraiser. “I still come today because it’s like family to me.”

A 69-year-old Pioneer Valley resident who asked not to be identified said being a member of the breast cancer group is a central source of support for her and one of the few places she can fully be herself.

“It is a safe place to share complex feelings, hear how others work to understand the natural mix of blessings and trauma reactions we each have, join in laughter at inside jokes, affirm each other’s strengths and bear witness to the pain,” she said. “I find I am stronger and clearer about what matters in life as I listen to others’ stories.”

The survivors in the group make “smart, strategic decisions, they keep getting up again and again and they give me the courage to battle the challenges I face every day,” she said.

Betsy G. Neisner, executive director of Cancer Connection, said the breast cancer support group was the first such group that the agency offered almost 14 years ago. One of the many benefits of the support groups are that they are run by trained facilitators and allow the participants to go into the depths of their emotions.

“People come in here and they have no idea what to expect. They don’t realize there’s a lot of laughter and they learn things they don’t learn from their doctors or they learn it in a different way because it’s told to them in different words,” she said. “They need a place to blow off steam and to say and feel whatever they need. It’s almost like a pressure release valve.”

Karen Lipton describes the group as a safe place where she can show her vulnerable side and not worry about being judged.

“When you can be that way you can actually face things that are fearful,” she said. “And for me facing something that’s fearful then makes me feel stronger and I feel more empowered.”


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