‘Cancer coaches’ help patients navigate choices

Navigating the system
Anna Cluxton, a Columbus, Ohio, woman diagnosed with breast cancer at age 32, feels strongly that she did the right thing having her whole breast removed rather than just the lump. When she coaches other young women whose doctors have advised less drastic surgery, she said she will not express an opinion, but suggests a pointed question: “Ask them, ’What will be my chances of recurrence in that same breast?”’

“You need to be aware of all the options” and discuss them fairly, she said.

Vira Brooks, an Omaha public schools administrator, had a different experience 13 years ago. Although she had a tiny, very early-stage tumor, her surgeon recommended removing the whole breast. She chose less drastic treatment after a survivor she knew coached her through looking at other options.

“She was basically my champion. She helped me navigate the system,” Brooks said. “She listened, she shared with me what she had been through,” but didn’t try to tell her what to do.

Brooks now tries to do the same. She has coached dozens of patients, including black women like herself who are more likely to be diagnosed at later stages and are more likely to die from the disease. A local hospital refers people to her.

As for Bernie Brann, the patient from upstate New York, she did not seek a lot of advice when she was first diagnosed. But word got around at Ithaca College Health Center, where the 69-year-old woman works two nights a week as a nurse’s aide.

Doctors told her she could either have a mastectomy or just the lump removed, and at first, she thought she would do the latter. “But I had so many people saying, ’No, no, no, that’s not the way to go.’ Most people said, ’Have a mastectomy.’ It was so radical. It just overwhelmed me. It was not something I wanted to do.”

She credits her three children with offering support without telling her what to do. Her oldest son went with her to appointments, as did a close friend with nursing training. Ultimately, she changed her mind about what would be best for her, and had a mastectomy in late December.

“I didn’t want to go through this again. My feeling was, get in there, get rid of it, get on with your life,” she said.

“It’s been quite a rollercoaster,” she said. But she feels more confident now that she can make good decisions about her future care.

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