Rosenthal, Eric T.
SAN ANTONIO, TX—What's been around about a baker's dozen years, turns breast cancer survivors into medical correspondents, and is currently led by a lady whose name is descriptive of the happy latter-half of the Rocky-and-Bullwinkle duo?
The answer isn't one that's that hard to remember, since it's the Alamo Breast Cancer Foundation, which is headed by Joy Moose, who describes herself as a survivor, military dependent, and real estate broker, and her organization as the Salvation Army of San Antonio breast cancer groups.
I met Ms. Moose and her colleagues at the most recent Charles A. Coltman Jr. San Antonio Breast Cancer Symposium, where they've been sponsoring a Patient Advocate in Research Program for the last seven years.
The program provides qualified breast cancer advocates from around the country with scholarships to attend the annual Breast Cancer Symposium. Advocates must represent an organization with a constituency, and have a basic knowledge of research either as a National Breast Cancer Coalition Project LEAD graduate, or from participating on breast cancer-related committees, panels, or review boards.
Each advocate is assigned a “Hot Topic,” and expected to attend all the sessions, talks, and poster sessions related to her respective area. Mentor sessions are held for three successive evenings, and feature breast cancer experts who interpret in lay terms each day's scientific sessions.
These sessions are open to all advocates, but are especially useful to those trying to put their hot topics into perspective in future written reports that are collectively available online and as CDs to those requesting them (www.alamobreastcancer.org).
Figure. Patsy Bentle...Image Tools
The first night's session included presentations by four clinicians and researchers including Gabriel N. Hortobagyi, MD, Professor and Chairman of the Department of Breast Medical Oncology at the University of Texas M. D. Anderson Cancer Center, and Sharon T. Wilks, MD, a San Antonio-based hematologist and medical oncologist with an interest in breast cancer, who formerly served as a US Air Force major at Lackland Air Force Base's Wilford Hall Medical Center.
Dr. Wilks, who has volunteered as an Alamo mentor and the editor of its Hot Topic Book for the past six years, said in a follow-up phone interview that the experience has made her a better physician, since it forces her to focus more carefully on the daily scientific sessions at the symposium so she can translate them in meaningful ways to her class of advocates at the meeting, as well as her patients back in the clinic.
“It's been an honor and privilege to be part of the mentor program,” she said.
Figure. Eric Rosenth...Image Tools
“I may be getting more out of it than some of the participants, since working as a mentor has been very educational for me and has given me a better understanding of my patients' perspectives. It's also been a humbling experience to serve on a panel with world-renowned oncologists like Dr. Hortobagyi.”
Ms. Moose noted that Dr. Hortobagyi had initiated contact with the Alamo Foundation to ask if he could participate as a mentor, a gesture that seemed to validate the importance of the program.
Although Dr. Wilks has been acively involved with Alamo for the last six years, she also played an indirect role in its growth shortly after it was founded 13 years ago.
Back then, when she was Major Wilks, she was Ms. Moose's medical oncologist at Wilford Hall, since Ms. Moose's husband was an Air Force pilot at Lackland. Following her treatment, Ms. Moose asked Major Wilks if there was anything else she could do to help others.
“Support groups didn't really work for me, since I wanted to do more than just sit around and talk about my disease,” Ms. Moose said.
“Dr. Wilks told me my life would change after treatment, that things wouldn't be the same as before. She suggested I do as many things as I could, and I knew I wanted to do more. The Alamo Foundation had been founded a few months before I finished treatment, and after I met Dale Eastman, another breast cancer survivor who was one of the Alamo founders, I got involved in the Foundation.”
Ms. Moose said that since she was a real estate broker and Ms. Eastman was a travel agent, their flexible schedules allowed them time to commit to Alamo. Both have alternated as president or vice president of the organization over the years, and been virtually “joined at the hip,” they said.
Ms. Eastman has served on the National Breast Cancer Coalition's board since the mid-1990s, with Ms. Moose the alternate.
Alamo is less a social group than many other breast cancer organizations, Ms. Moose said, liking it to the Salvation Army inasmuch as “we know how to get things done, have respect in the community, and do a lot of collaboration.”
She said about 11 years ago, Alamo was interested in setting up an exhibit table at the San Antonio Breast Cancer Symposium, but didn't have the required $1,000 fee. The advocates spoke with Charles A. Coltman Jr., MD, then President and CEO of the Cancer Therapy and Research Center, who agreed to waive the charges.
Then, about eight years ago, just prior to that year's symposium, Dr. Coltman and C. Kent Osborne, MD, invited Ms. Moose and Ms. Eastman to dinner.
The women were surprised to find that Amy Langer, then the Executive Director of the National Alliance of Breast Cancer Organizations (NABCO), was also a dinner guest. Coincidently, Ms. Langer was the 2004 William L. McGuire Memorial Lecturer, the first lay person to be so honored (OT, 1/25/05).
Dr. Coltman had arranged for Ms. Langer to join them to provide advice and guidance to the Alamo Foundation, and suggested at the meeting that the Foundation begin a Patient Advocate Program at the Symposium the following year.
“Dr. Coltman coaxed and guided us,” Ms. Moose said. “He even drafted a fundraising letter and gave us a list of potential sponsors.” They raised $61,000 the first year, enough to cover all expenses.
Since then an average of 35 women from around the country have received scholarships each year to attend the Symposium and write about the Hot Topics at each meeting.
The Alamo Foundation has also been very active in advocacy efforts at both the state and federal level, and has visited Austin lawmakers with Dr. Coltman.
It also staffs a 24-hour Breast Cancer Helpline; offers educational meetings, as well as outreach screening and education for the uninsured and underserved; publishes a quarterly newsletter providing updates on the latest research, legislation, and information related to breast cancer and breast health; and was instrumental in locating a grant that brought mobile mammography back to San Antonio.
Patsy Bentley, a 51-year-old breast cancer survivor from Magnolia, Aransas, who's had five cancer diagnoses over 10 years—twice breast and three times metastatic bone cancers, as well as the numerous side effects associated with metastatic disease—drove 11 hours each way with her husband to participate in the mentor program.
An adult education teacher, Ms. Bentley was a founder of the Steel Magnolias Breast Cancer Support Group, which has identified about 130 women and men with breast cancer in a town with a population of 10,000, and has a core group of 30 survivors who meet once a month.
She explained in a telephone interview that after years of working locally she wanted to move beyond her community, and subsequently received an Arkansas state award for her advocacy work.
Articles in two Little Rock publications, including recognition as one of eight women in the state who helped others, led her to apply for an Alamo scholarship award, although she wasn't sure if she was qualified.
“I was thrilled to learn that I had received one of the 27 grants this year, and I got to write a hot topic on ‘Bisphosphonates Improve the Safety of Some Hormonal Treatments of Breast Cancer,” she said.
“In addition to contributing to the Hot Topic project, I've also been able to share my experiences at San Antonio with my support group members, letting them know about the progress that's being made in research and treatment.”
Ms. Bentley also collected autographs at the Symposium from Susan Love, MD, and others she attributes to helping keep her alive.
“I know two years is the median survival for women with my disease, but all of us want to live on the tail-end of the statistics,” she said.
“I've been stable now for two years, and for me, it's been one day at a time. I hope I have the opportunity to participate in Alamo's advocacy program again next year.”
© 2005 Lippincott Williams & Wilkins, Inc.