A band of women with a special bond

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On Oct. 15, women from across the region attended BRA (Breast Reconstruction Awareness) Day at St. Joseph’s Hospital in London to learn about breast reconstruction post mastectomy. They heard directly from plastic surgeons about the various options and from women who have had the surgery. On hand was a vibrant band of women – members of the Circle of Sharing, a support group for women by women who have had or are considering breast reconstruction. They shared their experiences and even allowed women to view real results. The Circle of Sharing, created in 2009 by St. Joseph’s Breast Care Program, was ahead of its time, recognizing and responding to a need long before the emergence of national BRA Day. The support group is unique in breast care – for the generosity of spirit of its members, the wisdom they impart, and the comfort they provide. Here is the story of the circle:

When Lorraine Harvey made the decision to undergo breast reconstruction two years after a double mastectomy, there was no one to ask what it would be like, how she would look, how she would feel.

Janice Degroot, Sue Lemoine, and Sophia Collin had the same questions and few answers. All had undergone mastectomies and then reconstruction. While a deeply personal journey, each yearned for the same thing – someone to share it with, someone who knew.

“I had my doctor but it’s not the same as seeing and hearing from someone who has lived it, who could tell us we could make it, that we would be alright,” says Janice.

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The four women are founding members of the Circle of Sharing, a unique and powerful support program for women who have undergone breast reconstruction post mastectomy or are considering reconstruction. Created by clinical nurse specialist Margo Bettger-Hahn and social worker Colleen Eckert-Denver of the Breast Care Program at St. Joseph’s Hospital, the group helps breast cancer survivors and others adjust to a changed body image, redefine normality, draw strength from others, and celebrate reclaimed wholeness.

The program grew out of a 2008 research project at St. Joseph’s looking at patient satisfaction after breast reconstruction. As part of the research, Margo conducted focus groups to ask patients about their experiences. It was the first opportunity patients had to sit with others who had been through the surgery. They found the focus groups so meaningful and empowering “I knew something wonderful had just happened and we had an opportunity to act on it,” says Bettger-Hahn.

Among the appreciative focus group participants were Harvey, LeMoine, Collin and Degroot – the four were invited to become planners of a support group. In 2009 the dedicated women became the original Circle of Sharing – a name they chose – and began working on what the group should be. “It was important that it be what the women wanted it to be,” explains Bettger-Hahn.

Today, about 140 women are part of the Circle of Sharing, which is held three times a year, drawing a gathering of about 30 who come to learn from each other and discover they are not alone.

“It’s a group like no other,” explains Eckert-Denver.  “The generosity of the women, their wisdom, openness and candor, is unbelievable. They are so willing to be there for others. True friendships have grown from this group. It’s been wonderful to see.”

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For Collin, the Circle of Sharing is the “good that came out of a bad situation.”  For her, breast reconstruction didn’t go smoothly and resulted in 13 surgeries. “The whole process was lonely and frightening. If I had support like the Circle of Sharing at the beginning of my journey, it would have made a tremendous difference. The group is there for whatever your story is. I would have known that, no matter how bad it gets, you can get through it.”

Research shows there is tremendous value in being with like-minded people to share experiences when coping with a health condition, adds Eckert-Denver. “It reduces stress and anxiety, helps individuals feel understood, and actually speeds healing and improves outcomes. Families, regardless of how supportive they are, can’t fill that gap.”

Women share anything and everything at the Circle of Sharing, including showing the results of their surgery if asked, says LeMoine, who had a double mastectomy in 2004 after testing positive for the mutated BRCA gene that increases the risk of breast cancer. “After being part of the focus group I felt so strongly that everyone should have the opportunity to share.”

The purpose of the Circle of Sharing is not to promote reconstruction but rather help women make a decision that’s right for them and provide support for those who choose the option. In addition to sharing with each other, experts are invited to speak on a wide range of topics, from surgical techniques, to nutrition, to art therapy.

“It’s so individual, so personal,” says Degroot of the breast reconstruction decision. “For me, I knew if I got up in the morning and I saw me, it would help me heal.”

Now many years into their journey, all four women find something else in the Circle of Sharing – the satisfaction of helping others and a friendship only the circle can understand.

“There’s a connection and a bond,” says Degroot. “A very special bond.”