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Finding Support and Community: Sarah McClain

October 10, 2013

Written By Robin Warshaw

Sarah J. McClain was sure the lump she found in her breast was nothing to worry about. So the Akron, Ohio woman went alone to a post-biopsy appointment with her surgeon. He told her she had breast cancer.  

Everything else he said “went blank” in her mind, Sarah recalls. At 37, she was a clinical social worker and was raising two of her siblings’ children. She went home and searched online for breast cancer information. A few days later, she was told she had triple-negative disease.

For her first visit with an oncologist, Sarah took her sister and a co-worker who had been through treatment for breast cancer. The women were there to provide support and take notes for Sarah as she and the doctor talked about her treatment options.

The oncologist said her cancer was probably stage II. Then a PET scan, ordered by a new surgeon, showed several spots on her liver and spleen. The cancer had spread. Sarah had metastatic (stage IV) breast cancer.

Meeting Others With Similar Diagnoses

A week or so later, Sarah began attending group sessions at a cancer support center. “For awhile, I was the youngest one there by far,” she says.

She is the only woman diagnosed with metastatic breast cancer who attends regularly. “I know someone else will come and I will be there for them,” she says. Having metastatic disease “is a lonely little world.”

Sarah told her oncologist she didn’t want to talk about her prognosis, or how well she might do. That was before she attended a Living Beyond Breast Cancer conference for women with metastatic disease.

She found it empowering to sit in a room where all the women had a diagnosis similar to hers. They understood what she was feeling. Like Sarah, many were looking for information from the experts who spoke. Some women shared their experiences.

“Women stood up and talked about being metastatic for 20 years or more,” she says. “That’s when I decided I had a prognosis…I decided I’m going to be one of those!”

From then on, Sarah’s vision for herself took shape. “I will live,” she says. “I decided that I was going to have fun and enjoy my life. I didn’t have to make it all about the breast cancer fight.”

Expanding Community

After returning home, Sarah heard from a support group friend that a dragon boat paddling team was welcoming new members. Known as the Dragon Dream Team, it was solely for women affected by breast cancer.  

The women paddle together for emotional and physical strength. No paddling (a different stroke than rowing) or athletic experience is needed.

Despite her new determination to have fun, Sarah thought it wasn’t for her. “I was petrified of boats,” she explains.

Finally, she agreed to go to a session. When it was time to try paddling, she told a team member she was frightened of being in the boat. “One lady sat behind me and said, ‘I’ve got you.’” That reassured her.

Sarah had not exercised regularly for years due to parenting and job duties. “At first, I couldn’t last for a minute,” she says, although she had played women’s professional football early in her social work career. Practice helped her get stronger.

Paddling for 4 months now, she wears a sleeve and glove to reduce hand swelling from treatment-related lymphedema. She has raced in her hometown and competed in 500-meter races at a Washington, D.C. event. She is looking forward to more.

“You can leave your cares on the water,” says Sarah. “You have a team—people who are in the same boat, literally.”

Supportive Connections

Sarah comes from a family that helps one another. A sister dropped out of college to raise Sarah (then 13) and her siblings after their mother died. In her 20s, Sarah began parenting her two nieces. Her family has given her emotional and spiritual strength.

Her healthcare providers also supported her. Her primary physician and gynecologist helped her communicate with her oncologist when she was having a hard time trusting him and understanding what was going on. “They helped me build a relationship with him,” she says.

Sarah’s friends, relatives and co-workers attended a “going away” party for her affected breast just before her mastectomy. “I told my cousin I didn’t want my oncologist to be the last man to touch my tata,” Sarah says,with a laugh. Her cousin hired a male stripper. “We had a lot of fun.”

Her team of friends includes her support group and the women of the Dragon Dream Team. “I wouldn’t trade my dragon boat sisters for anything,” she says.

One month or two after she started paddling, Sarah’s CAT scans showed no evidence of disease. She has been on a chemotherapy break.

“I have a great support system,” she says. “That’s really helped.”

This article was supported by Cooperative Agreement Number DP11-1111 from The Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention.

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