Date:
02/11/2008 01:55 PM Cancer treatment choices often overwhelming; finding
a trained 'coach' can help with decisions
By MARILYNN MARCHIONE
AP Medical Writer
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.
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.
