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Advocates Gather in Texas for Annual Breast Cancer Research Conference
By Kathy LaTour
Survivors and advocates make a place for themselves among oncologists and researchers at the San Antonio Breast Cancer Symposium
The first time Dale Eastman attended the San Antonio Breast Cancer Symposium she didn't know what the word advocate meant. She just knew that she didn't want other women in San Antonio to go through what she did when she was diagnosed with stage 3 breast cancer in 1991 after being put off repeatedly by the medical community, she says.
"I got through it, but it's not fair that the rest of the women in my community are not educated," she says. "Being confronted by my own mortality made me want to give back." A year after her diagnosis, her determination resulted in the creation of the Alamo Breast Cancer Foundation (ABCF), now a member of the National Breast Cancer Coalition (NBCC).
Eastman first attended the San Antonio Breast Cancer Symposium, the world-renowned research conference, in 1994 when advocates weren't really invited to what was then a purely medical meeting. She and other volunteers from the ABCF convinced the symposium organizers to let the group have a table with educational information. And as other women from around the country began showing up at the symposium, they were drawn to the Alamo table, making it clear that advocates were going to come whether they were invited or not.
Over time, the symposium directors decided the growing number of advocates who were showing up each year should be included in the program. They invited Eastman and Joy Moose, President of the ABCF to dinner, she says, and asked them to create a program that would provide structure for advocates.
Eastman and the ABCF board of directors created the Advocate Program in 1997, which this year celebrates its 10th anniversary, along with the symposium's 30th anniversary. The program now provides grants to nearly 40 women from around the world to attend the conference and return home to distribute the information to their communities. Since its founding, more than 350 advocates have completed the program, which requires participants to attend all symposium sessions, write about one "hot topic," be a graduate of Project Lead — the intense scientific workshop put on by the NBCC — or a comparable program, and be at least one year out from a primary diagnosis of breast cancer. Participants are also expected to be part of an advocacy program or represent a constituency so they can disseminate the information they gather, Eastman says. The hot topic papers are compiled at the end of the symposium to be available online throughout the year.
Eastman says around 100 people apply each year for the maximum of 50 available spots. The 36 advocates attending this year represent such diverse organizations as Sisters Network, Young Survival Coalition, Susan G. Komen for the Cure, Y-ME, SHARE: Self Help for Women with Breast and Ovarian Cancer, and various other support groups around the country. Among the advocates will be representatives from Nigeria, South Africa, New Zealand, and Germany. During the symposium the advocates gather on Thursday, Friday, and Saturday afternoons to ask mentoring physicians questions and to explain to the rest of the advocates what they have heard in the medical sessions. Susan Love, MD, an annual mentor, will be joined this year by Dennis Slamon, MD, PhD; Julie Gralow, MD; Powel Brown, MD, PhD; and others. Eastman says these meetings are open and have grown to include other advocates attending the symposium, and even some doctors and pharmaceutical representatives.
"We had to move to a larger room," Eastman says. "Last year we had around 200 attendees each night."
Rich Markow, director of the San Antonio Breast Cancer Symposium, says the number of advocates registering for the symposium has increased each year, with the growth matching the increase in doctors and researchers attending the meeting, adding that this year around 8,700 participants are expected with around 240 registering as advocates. But Markow says the number is hard to determine since many people register under two or three different categories, and some nurses and physicians don't register as advocates when that may be their primary reason for attending.
Since beginning in his role in 2001, Markow says the advocates and the groups they represent have become more diverse, and that this year, in addition to the ABCF, there will be representatives from 14 other groups that include Facing Our Risk of Cancer Empowered (FORCE), HER2 Support, Living Beyond Breast Cancer, Y-ME, Gilda's Club, Sharsheret, and the John W. Nick Foundation, which focuses on breast cancer in men.
Each advocacy group comes with its own plan, ranging from getting new information for their constituents and keeping updated on all aspects of the disease to talking with physicians about their group's agenda.
Christine Druther, founder of the HER2 Support organization, wants physicians to pay more attention to brain metastases in women who have HER2-positive breast cancer, an aggressive form of cancer that is fueled by overexpression of the HER2 protein. Initially diagnosed in 1990 with stage 1 breast cancer, Druther had a recurrence in 1999, with the cancer spreading to the lymph nodes under her collarbone and sternum and to her brain. After the first doctor offered her little hope, she engaged in a personal crusade to find treatment, ultimately moving to California where the brain metastases were treated with Gamma Knife, a non-invasive form of surgery that uses high-precision radiation.
Druther was also put on a regimen of existing chemotherapy drugs for the tumors below the neck, but when her tumors didn't respond, she was finally given Herceptin (trastuzumab), which had been approved seven months before her recurrence.
Druther, who continues Gamma Knife treatment for recurrent brain metastases, has made it her goal to not only educate other breast cancer patients, but also to increase awareness in the medical community about the likelihood of brain metastases in women with HER2-positive breast cancer.
"I had to do all the research myself," says Druther, who is bringing eight representatives with her to the symposium. "But women diagnosed today who are HER2/neu-positive won't have to because we are getting the information for them."
CURE and Heal would like to give a special thanks to the following non-profit partners
for making this information available to their constituents:
American Cancer Society • People Living with Cancer
HER2 Support • Inflammatory Breast Cancer Research Fund • Men Against Breast Cancer
National Breast Cancer Coalition • Pink-Link
