Fighting breast cancer; A Native woman's journal; NEW THERAPIES, NEW HOPE

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"For all my granddaughters, all my grandsons and all my relations," an
80-year-old breast cancer survivor from South Dakota's Cheyenne River
Reservation said as she talked about the reasons why she joined a clinical
trial of new radiation technology to treat her breast cancer.

A clinical trial is a study of new drugs, therapies or prevention methods
on people who volunteer. The volunteers generally have life-threatening
diseases such as cancer, cardiovascular conditions and diabetes. They
volunteer because clinical trials offer the newest, and often best-known,
medical treatments.

Some volunteer - ignoring rude comments about being human guinea pigs -
because other treatments have failed to control their cancer.

But this mother of 13, grandmother of more than 40 and great-grandmother of
15 from Eagle Butte, S.D., decided to look to the good of the seventh
generation. That's why she joined in a clinical trial of new radiation
therapies at the Rapid City Regional Hospital - and in the process, saved
her breast.

This clinical trial is one of the first in the nation to study the benefits
of state-of-the-art cancer treatments among American Indian patients.

The therapies use technology to pinpoint tumors with high doses of
radiation that kill the cancer, but unlike conventional radiation therapy
leave the surrounding healthy organs alone. The radiation is so
specifically directed that doses can be higher than normal and treatment
can be as short as one or two weeks, rather than the six to eight weeks of
conventional radiation.

"This is the kind of treatment that usually only the king of Jordan can
receive at the Mayo Clinic," said radiation oncologist Dr. Daniel Petereit,
who is leading the trial. "Now it's available to Native Americans."

Getting this treatment in western South Dakota, where reservations have
some of the nation's highest poverty and unemployment rates, would have
been unthinkable a decade ago. Only a few years ago, the federally-operated
National Cancer Institute shifted its funding focus from exclusively major
university hospitals to include regional, community-based medical centers.

The Rapid City hospital, which in 2002 was the ninth institution in the
United States to get the revolutionary TomoTherapy technology, received
that year a $5.4 million federal grant to explore the use of it and another
radiation treatment to close the health care gap among Natives. They named
the study Walking Forward.

TomoTherapy shoots a high-intensity beam of radiation into a patient's
tumor, while the patient sits on a bench that rotates so the beam hits the
tumor from different directions. Brachytherapy uses tiny tubes or a balloon
to deliver radioactive grains directly to the tumor.

The treatments often reduce the extent of surgeries by shrinking tumors
down to nothing. That's important for women who would rather have a
lumpectomy and save their breasts than have a mastectomy. It's also
important for patients with prostate and colon cancers, among others. All
three types of cancer that I mentioned are hurting a lot of Natives in the
Dakotas, the northern Plains and elsewhere.

Science fiction-worthy technology wasn't on the mind of our Cheyenne River
Sioux elder when she was diagnosed with a tumor in her breast last year.
That's not to say the elder was averse to technology. For years she had
preached the importance of mammograms, and practiced it by getting her
annual through her reservation's Winyan Wiconi program. That means "healthy
women" in Lakota. But the tumor threw her, and her family, for a loop.

"The first thought was do a mastectomy because we wanted the cancer taken
away immediately," her 44-year-old daughter said. "The second thought was,
how are we going to go back and forth 180 miles from Eagle Butte to Rapid
City every day?"

Poverty, distance and rundown cars may be contributors to the high rate of
cancer deaths among Native people, said Caroline Spotted Tail, the
community researcher for Walking Forward on the Rosebud Reservation.

"I can understand how people have an even harder time when you don't have
the money, much less think about a place to stay," she said. "I think
that's why a lot of people drop out of their treatments. It's not
necessarily that they don't want to go."

Spotted Tail once managed the Naha Oti Hotel, which the nonprofit Native
American Heritage Organization owned in Rapid City. Until its closure in
2001, it gave Native patients and their families a place to stay during
dialysis, while a family member was in intensive care or while someone was
getting cancer treatment.

"A lot of cancer patients stayed with us for six or eight weeks," Spotted
Tail said. "A lot of them said they might not have been able to come for
treatment if not for us."

Walking Forward is able to fill part of the gap left by that hotel.
Petereit wrote into the grant provisions to help patients buy gas, food and
lodging during their treatment.

Kevin Malloy, a nurse at the Rapid City hospital, meets with
newly-diagnosed Native cancer patients. So far, 78 people are under his
watchful care.

"We're sort of a safety net that hasn't been here before," Malloy told me.
"We talk a lot about self-advocacy, about how to present question to
physicians."

Asking questions is key to getting into a clinical trial, said Holly Anna
Pinkham, spokesman for the nonprofit National Office of Native Cancer
Survivorship. But many Native people aren't aware of what a clinical trial
is, let alone how to get into one, she said.

Pinkham, a 37-year-old Yakama, is a two-time skin cancer survivor who is in
a clinical trial now for a rare allergy she has developed to sunlight. She
joined the trial because there wasn't an established treatment protocol for
her condition. For Pinkham, getting help meant trying something really new.

"I know people joke about being a lab rat, but at the same time if they
don't try something how will they know if it works?" Pinkham said. "You can
test on animals, but until they test on the human body, they don't know how
it reacts with humans, with races, with genders."

For Petereit, Walking Forward meant taking steps into tribal communities
that were new for the hospital. Petereit and Malloy visited tribal councils
throughout South Dakota seeking and receiving resolutions of support for
the program.

In return, they promised to periodically bring back information from the
trial and from a survey that Walking Forward is conducting about barriers
to health care among the state's Native people.

Our elder said that the program in an urban hospital gave her the kind of
respect that she enjoys in her large family. Even while the elder was
receiving treatment, her daughter was impressed by the way hospital staff
honored her modesty by letting her keep her breast covered at all times.
It's her modesty that made the elder ask that I keep her name private in
this column.

Our elder, who received news last week that she remains cancer-free,
brought a gift to the program and to her own health. It was one that didn't
need a clinical trial to prove its worth.

"I was praying all the time," she said. "After it was all over with, I told
them, 'I said a little prayer for all of us.'"

Kara Briggs is a Yakama journalist from Portland, Ore., where she is
currently on medical leave from her job at The Oregonian. She chronicles
her battle with breast cancer in this bimonthly series. She is a former
president of the Native American Journalists Association and winner of the
2004 Richard LaCourse Award for Investigative Journalism.

She is interested in the experiences of readers who have had cancer and
also remedies, cultural practices or unusual treatments that have helped
them. Contact her by e-mail at briggskm@gmail.com or by mail through
Indian Country Today.