Breast Cancer Patients Demand Role in Treatment

One night in the mid 80s, she crawled into bed and, "I happened to roll over on the pillow," she recalls. "My arm was under my body and I felt a little pea-like lump."

Worried, Rogers went to the doctor the next day. He assured her that he could detect nothing. "And, not knowing anything about it," she said, "I didn't seek a second diagnosis."

A year later, Rogers' new health insurance required a complete physical. What it turned up was no longer pea-sized. Rogers had a cancerous tumor, which by then had grown much larger.

She called Y-ME -- a national support and advocacy organization based in Chicago with 17 chapters nationwide. Y-ME receives 17,000 calls a year from women like Rogers seeking help via its national hotline.

As the incidence of breast cancer rises, Y-ME has become part of a larger movement in which breast cancer survivors support one another by sharing their experiences and lobbying for funding of breast cancer research. In recent years, representatives of this movement have even gotten themselves seats on medical review panels directing the use of research dollars.

"I wasn't informed enough -- I just didn't know that you should get a second opinion," said Rogers. Now, a decade later, after a mastectomy and lengthy chemotherapy, Rogers is on the staff of Y-ME and determined to make sure that other women fare better.

She and her colleagues at Y-ME believe they can be part of the cure and have an important role to play in educating patients as well as the medical community.

Doctors are beginning to listen.

Two decades ago "when Y-ME first started, doctors didn't like an informed patient," said Sharon Green, executive director of Y-ME. But "as women demand more, doctors have begun to respond and take their patients seriously. They're no longer belittling the inquisitive patient. They're offering women more options."

Green said that lumpectomies, in which only the tumor is removed and not the entire breast, are being offered today in part because patients pushed for choices other than mastectomies. She pointed out that laws in many states now mandate doctors to provide options to patients.

Some doctors, however, see potential problems if patients insist on doing everything their way.

The downside is that "they may get bogged down in areas of controversy and delay treatment or insist on treatment which may not be medically necessary," said Monica Morrow, a surgeon who directs a breast cancer center at Chicago's Northwestern Memorial Hospital.

Nonetheless, in Virginia breast cancer survivors are invited by medical facilities throughout the state to provide patients' perspectives on treatment options and new facilities. Recently they were also asked to give their opinions on an interactive computer program that takes patients through treatment options.

One participant is Margaret Borwhat, who went through a mastectomy in 1992 and then became a leader in the Virginia Breast Cancer Foundation -- the non-profit advocacy group in Richmond, Va., organizing this patient input. Borwhat hopes also to reduce patients' suffering.

In 1991, Green and seven other directors of women's health advocacy organizations co-founded the National Breast Cancer Coalition, a grassroots advocacy network of more than 350 organizations and 40,000 members.

This past spring in Washington D.C., it convened an advocacy training conference to help build on its string of political victories in recent years.

Five years ago the coalition's national letter-writing campaign generated more than 600,000 letters to Congress and the president. The pressure helped produce a 50 percent jump in appropriations, for a total of $132 million, to the National Cancer Institute earmarked for breast cancer research.

A year later the coalition successfully battled Congress for $210 million for the defense budget, in particular the U.S. Army's breast cancer research program, one of many research projects related to the health of enlisted men and women.

And last year the coalition crossed a line that's rarely bridged by those who are not trained medical professionals.

As part of what the coalition called "Project Lead," it began to train survivors in the science of breast cancer so they can knowledgeably participate in the peer review sessions determining where research funds go, according to Jane Reese-Coulbourne, a breast cancer survivor and the coalition's executive vice president.

"We've had an impact," said Reese-Coulbourne. As one example, she cited a funding panel in California that backed multiple research projects on drugs similar to tamoxifen, which has limited use in breast cancer treatment.

Survivors on the panel at the University of California argued, "We already have tamoxifen. Why do we need eight more like it?" Reese-Coulbourne related. She said the panel wound up shifting its focus last year to research into the causes of breast cancer.

Breast cancer survivors are also influencing decisions about how to run "clinical trials," or experiments involving human subjects. These experiments are often more painful, involving higher doses of radiation or chemotherapy, than need be, according to Reese-Coulbourne.

But now, survivors on the review panels are spotting the problems ahead of time, before the research gets funded, she said, noting: "As a patient, you're thinking, 'Who thought this up? Are they crazy? Nobody is going to sign up for this, and they're not going to get the data they need to make advances in research.'"

Advice like this gives the scientists "a better perspective in terms of what's important in the research," said Dr. Harold L. Moses, director of the Cancer Center at Vanderbilt University who has sat on the U.S. Army research review panels since 1993.

"It's also helpful to have consumers appreciate better what's involved in doing the research, how complicated it really is," Moses added.

Part of the problem, as Reese-Coulbourne sees it, is that researchers, perhaps unconsciously, think that "if you're a cancer patient, you're going to die anyway. But, "a few of us surprise people and live longer than we should have," she said. "I have."