Cancer Treatment Choices Is Often Overwhelming;
Finding a Trained "Coach" Can Help With Decisions
Saturday, February 16, 2008        13:22 EST

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.

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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.

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.

To find a coach or navigator, patients can ask their doctors, local
cancer hospitals or groups like the cancer society for help. Brann,
feeling a need for unbiased help, found a coach by calling the Cancer
Resource Center of the Finger Lakes, where associate director Bob Riter
provided it.

"People are usually too free about giving advice," said Riter
(pronounced RITT-er), a survivor of male breast cancer and graduate of
the San Antonio program. "We never tell people what to do. We provide
information, and we help them think out loud."

Whether amateur or professional, a good cancer coach should offer these
things, experts say:

_Support: an ear to listen, a shoulder to cry on, a hand to hold.

_Resources: reliable information or help getting it, and only if the
patient wants it.

_Objectivity: a willingness to help patients discover what is best for
them, rather than to validate the coach's own cancer battle and choices.

"There's a big difference in saying, 'This is what I did' and 'Here's
what you should do,'" Riter said.

Elderly people are especially vulnerable to having their decisions
usurped, he added. "Sometimes middle-aged kids impose what they want to
do on their parents" without asking what the parent wants.

No hard numbers exist on how many cancer patients bring professional
coaches or informal ones _ a relative or friend _ to doctor appointments
where treatments are discussed.

"The person coming with you can either be an asset or a liability," said
Meg Gaines, a lawyer and ovarian cancer survivor who runs the Center for
Patient Partnerships, an advocacy resource at the University of
Wisconsin-Madison.

It is good if the coach can ask questions, gather information and take
notes for the shell-shocked patient to use later, she said. It is bad if
the coach interferes with the patient's decisions.

Doctors often find themselves in the middle, fighting for the patient's
trust. Some choices come down to personal values and risk tolerance,
said Dr. C. Kent Osborne, a breast cancer specialist at Baylor College
of Medicine in Houston.

Whether to have chemotherapy is an example. Some women want to avoid it
at all cost. Others "don't want to leave any stone unturned," and demand
it even if it has harmful side effects and only a 1 percent chance of
helping, he said.

As for patients being swayed by others, "a lot of that occurs when
they're not in the doctor's office and they go back to their home and
their community," Osborne said. "Then well-meaning friends might say,
'Well, gee, I was treated with this and you should get that,' or 'Aunt
Molly got this and you should get that, too,' not understanding that
every patient is different."

Patients can fall into the same trap when they coach each other, Gaines
said.

"This is the potential downside of support groups _ you don't have
expertise around the room," she said. "Someone may be describing her own
treatment and others will think, 'My doctor didn't tell me that,'"
possibly because their cancer is different.

Mary Michaud, policy director at the Wisconsin center, warns: "Beware of
people who tell you your experience is going to be just like theirs."

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.

___

On the Net:

American Cancer Society: http://www.cancer.org

Personalized treatment decision tool: http://tinyurl.com/2uvyu6

American Society of Clinical Oncology patient site: http://www.plwc.org

National Cancer Institute: http://www.cancer.gov

Treatment options: http://www.nccn.org/patients

Association of Cancer Online Resources: http://www.acor.org
___________________________________
Breast cancer support groups:

http://www.y-me.org

http://www.komen.org

http://www.bcaction.org

http://www.stopbreastcancer.org

___ Blue Wave/QWK v2.12