WASHPOST: Split Decision ... A New Effort Aims to Sway Breast Cancer Patients to Opt for Conservative Rather Than Radical Surgery
From: Ilena Rose (ilena_at_san.rr.com)
Date: 10/19/04
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Date: Tue, 19 Oct 2004 08:44:48 -0600
http://www.washingtonpost.com/ac2/wp-dyn/A43125-2004Oct18?language=printer
EXCERPT: The National Center for Women & Families has been active in
questioning the safety of silicone breast implants, so it gets a lot
of calls from women complaining about their breast reconstruction,
said Zuckerman. After a while, staffers noticed that many callers had
been diagnosed with ductal carcinoma in situ (DCIS), a common
precancerous condition that make them excellent candidates for
lumpectomies.
"There were a lot of women who had double mastectomies that never had
cancer to begin with," Zuckerman said.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`
Split Decision
A New Effort Aims to Sway Breast Cancer Patients to Opt for
Conservative Rather Than Radical Surgery
By Tinker Ready
Special to The Washington Post
Tuesday, October 19, 2004; Page HE01
A woman diagnosed with early breast cancer often leaves her doctor's
office with a tough decision to make. Should she have the cancer
removed or have her entire breast removed? No matter what she chooses,
doctors and researchers agree, her chance of surviving is the same --
even if the cancer returns.
But more than 15 years after so-called breast-conserving surgery
became a proven option, about half of the roughly 130,000 U.S. women
diagnosed with early stage breast cancer each year still opt for
mastectomy over lumpectomy.
Some researchers and breast cancer advocates say this means many women
are getting mastectomies they don't need. So, working with the
National Cancer Institute (NCI), they've developed a free booklet
designed to help the newly diagnosed choose between the two surgeries.
The 21-page brochure "Surgery Choices for Women with Early Stage
Breast Cancer," to become available this month, aims to put a complex
decision in the patient's hands from the outset.
The booklet is needed, said Washington epidemiologist Diana Zuckerman,
one of its authors, in part because not every physician is up-to-date
on the science of breast cancer. "If a woman asks her doctor,
depending on who her doctor is, she may not get the best possible
advice," said Zuckerman, president of the National Center for Women &
Families.
"Not everybody reads that research, and the people giving advice are
not always experts in the field."
Plus, said Zuckerman, women often need time after diagnosis to make a
hard choice on treatment.
"These women are in their doctor's office and the doctor says, 'You
can do this or you can do that.' They get home and they can't remember
anything because they are so stressed out . . . . It's not that any of
this information is a secret. It's putting it all together in a
booklet which is quite different."
Said Washington breast cancer activist Zora Brown, founder of the
Breast Cancer Resource Committee, "This is a document we can use."
Facing the Odds
When doctors found Brown's cancer more than 20 years ago, lumpectomy
was an emerging treatment and there were no long-term data on its
efficacy. Today, the now-routine operation is acknowledged as offering
the same survival rate -- about 70 percent of women living at least 10
years after surgery -- as mastectomy, the surgery Brown chose.
Still, many women are confused by the odds of a recurrence -- odds
that differ between the two operations. Although mastectomy patients
are less likely to get cancer again, they don't live any longer, on
average. That is because not all breast cancers are equally
aggressive. Some tumors grow very slowly and never become fatal, while
others are lethal even with early detection. So, the odds of dying may
have as much to do with unpredictable nature of a single tumor as it
does with the number of tumors.
In addition, the best treatment choice for early stage breast cancer
often has more to do with psychology than medicine. It depends, said
Zuckerman, on how a woman feels about her body, how she feels about
radiation exposure and how much she is willing to risk a recurrence.
Connie Parks-Walczak, an administrative assistant from California, had
to make the choice last fall. When chemotherapy failed to shrink a
tumor in her breast, she was more than willing to have a mastectomy if
it would increase her survival odds. But Parks-Walczak, 50, said her
doctors convinced her that a lumpectomy would be equally effective.
Even as the nurses wheeled her to the operating room, Parks-Walczak
told them the surgeon could take off her breast "if they saw something
funky." They didn't.
"My incision looks great," she said. "I guess I am happy with my
decision. The one thing my doctor did tell me is that a recurrence in
the breast would simply mean a mastectomy. There is a 10 percent to 15
percent chance that would happen. I can live with those odds."
Not everyone can. Last summer, Oregon innkeeper Liz Brady was
diagnosed with invasive lobular cancer -- cancer that begins in the
milk glands. With a family history of breast cancer, the mother of two
sought guidance from a book and a Web site sponsored by a university
medical center. Then she opted for a double mastectomy.
"I know losing both breasts will be traumatic, but not as traumatic as
being told I have cancer again sometime in the future," she said just
before her surgery. "Mine was caught early . . . but it was scary
nonetheless. I do not want to experience this again and will do
anything to lessen the chance."
Caution is not the only factor that leads women to mastectomies when a
lumpectomy would do. Some don't want -- or don't have easy access to
-- the five to eight weeks of radiation treatment that routinely
follows a lumpectomy. Others don't want to face the second round of
surgery that would come with a recurrence. And some can't afford the
cost that outpatient radiation treatments can add to lumpectomy -- a
cost not always covered by health insurance plans.
Mastectomy Profile
In general, breast surgeons agree that the overall mastectomy rate is
too high, said Christine Teal, director of George Washington
University Medical Center Breast Care Center.
Many were surprised, said Teal, by a recent study that found the
United States had one of the highest mastectomy rates in the world. In
the United States, 56 percent of early breast cancer patients had
mastectomies, compared with 28 percent in France and 31 percent in the
United Kingdom. Teal, who called the findings "embarrassing," said she
expected the mastectomy rate will drop as patients continue to learn
more about the two procedures. But, she said, poor access to radiation
treatment centers will continue to be an issue for some women.
At Georgetown University Medical Center, breast cancer patients get
help in making treatment decisions from a multi-disciplinary team that
includes a medical oncologist, a surgeon and a radiation oncologist,
said Minetta Liu, an oncologist in the hospital's breast cancer
program. "The patients I see are very well-informed, and that may be a
function of where we are," she said, referring to the well-educated
patients and well-equipped hospitals in the Washington area. "There
certainly are a number of patients [elsewhere] who don't have that
luxury and are told one thing and have to go along with it."
The new brochure was written with those women in mind: patients who
have not gotten the message that lumpectomy is a viable option,
patients without Internet access or without the patience to sort
through the more than 600 Web sites produced by a Google search for
"surgery for early breast cancer."
The profile of women most likely to get mastectomies suggests they may
not have the education or resources needed to make a clear choice.
For example, studies have found that uninsured and low-income women
have a disproportionate number of mastectomies: That may also be
because mastectomies are less expensive and more convenient than
lumpectomies. Women in rural areas are also more likely to have their
breast removed, possibly because they are less able to take time off
work to drive long distances for intensive radiation treatment. Older
doctors are more likely to recommend mastectomies and older women are
more likely to have them, possibly because they may not be up-to-date
on the standard of care.
The National Center for Women & Families has been active in
questioning the safety of silicone breast implants, so it gets a lot
of calls from women complaining about their breast reconstruction,
said Zuckerman. After a while, staffers noticed that many callers had
been diagnosed with ductal carcinoma in situ (DCIS), a common
precancerous condition that make them excellent candidates for
lumpectomies.
"There were a lot of women who had double mastectomies that never had
cancer to begin with," Zuckerman said.
The center found plenty of data on variations in surgery rates from
region to region, doctor to doctor and among different groups of
patients, such as the insured and the uninsured. In Zuckerman's
opinion, that signals that women are getting unnecessary mastectomies.
"It's not that [researchers, surgeons and activists] didn't know," she
said. Rather, "it was not being talked about outside of that small
circle." The idea for the brochure emerged when scientists and women's
health advocates met in Washington to discuss the issue in 2001.
Zuckerman said she had looked, without luck, for sponsors to help fund
and distribute the brochure until she connected with the NCI. The
agency had already planned a similar project, so they collaborated.
Trade-Offs
The first challenge, said Lenora Johnson of the NCI Office of
Education and Special Initiatives, was to reword Zuckerman's draft
document, originally written for someone at a sixth-grade reading
level. Subsequent compromises between Zuckerman and NCI covered a
range of topics from how much text to include to how to define early
breast cancer.
The resulting purse-sized booklet outlines a six-step decision-making
process that starts with "Talk to your surgeon," but advises women to
"ask a lot of questions and learn" as much as they can. It also urges
those in doubt to get a second opinion, explains the five stages of
early breast cancer and the different surgery options. A chart
compares the cosmetic, medical and logistical implications of three
approaches -- lumpectomy, mastectomy and mastectomy with
reconstruction. The last step asks a woman to answer a series of
questions to help her choose which approach works for her.
Not everyone is satisfied with the end product.
Barbara Brenner, a patient advocate at the nonprofit Breast Cancer
Action in San Francisco, thinks the brochure is so simplified that it
leaves out important information. For example, she said, some women
might want to consider lumpectomy without radiation. That option
offers the same survival rate as lumpectomy with radiation, but a
higher recurrence rate. She also disagrees with Zuckerman that the
high mastectomy rate suggests that women are getting unnecessary
operations.
"These claims that we're doing too many mastectomies fail to account
for the intensely personal decision-making process about what to do
about your breast once you have cancer in it," Brenner said. "There
are people I know who would clearly qualify for a lumpectomy. Their
reaction is, 'My breast is my enemy and I want it off.' No matter what
you tell them about survival, they don't want their breast around
anymore."
But other health advocates are convinced that the brochure can help
more women make an informed choice. Canadian researcher Tim Whelan
studies women with early breast cancer who were given educational
materials designed to help them make a decision. Of those women, 94
percent chose lumpectomy, compared with 76 percent of women who did
not have the so-called "decision aid."
Meanwhile, the percentage of women who have mastectomies is starting
to shift, said Whelan, who directs the Supportive Cancer Care Research
Unit at McMaster University in Hamilton, Ontario.
"Although there is variability, the overall [lumpectomy] rate is
increasing, which implies women are starting to get this information,"
he said.
But the research also indicates that some are not, especially in rural
areas. With the knowledge that some women need this information more
than others do, NCI plans to put a special focus on distributing the
brochure, said Johnson. The brochure can be ordered on the NCI Web
site (www.nci.nih.gov) or by calling 800-4-CANCER (422-6237). ?
Tinker Ready is a freelance health and science writer in Cambridge,
Mass.
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