‘Cancer coaches’ help patients navigate choices

The advice made her head spin: Have the lump removed. No, let them take the whole breast. Chemo? Radiation? Everyone seemed to have an opinion.

“I just shut everyone down around me,” said Bernie Brann, a newly diagnosed cancer patient from upstate New York. “You’re just so overwhelmed with information.”

Bad advice, or just too much of it, can compound the trauma and damage done by the disease itself, cancer patients often find. Friends and relatives are important for support, but when these untrained people act as cancer coaches, they can sway people to make poor decisions about their care.

This includes survivors, whose opinions are highly valued by patients suddenly facing the scary diagnosis. They may know a lot about cancer, but can do harm if they project their own experiences onto someone else, who may have a different form of the disease that needs different treatment.

Survivors also may be out of touch with changes in the field, where genetic discoveries are rapidly reshaping notions of who needs chemotherapy and what kind.

What’s the solution?

Many advocacy groups and hospitals are using “professional” coaches — trained volunteers or paid workers who can objectively help new patients navigate the maze of information and options.

Information, not advice
The American Cancer Society started a patient navigator program a few years ago that now operates in 87 locations and is planning to expand. The National Breast Cancer Coalition also trains coaches, and big treatment hospitals like the University of Texas’ M.D. Anderson Cancer Center are increasingly using them for breast, prostate, lung and other types of cancer.

Attendance set records in December at one of the top training programs, held during the San Antonio Breast Cancer Symposium. More than 240 breast cancer survivors spent late nights at the convention center, taking notes as scientists schooled them on the latest research.

These women go home to volunteer in hospitals and support groups where they staff hotlines, meet with new patients and teach other coaches what they learned. Demand for this training is so great that the Alamo Breast Cancer Foundation gets grants from the Avon Foundation and nine drug companies to subsidize some attendees, but still can’t meet the need. Dozens are turned down each year.