Eric Rosenthal Reports

Thoughts and observations about issues, trends, and controversies in the cancer community.

Sunday, December 15, 2013

How One Breast Cancer Survivor Evolved into an Advocate and Spokesperson for Several Breast Cancer Groups

SAN ANTONIO – I’ve met many cancer survivors and advocates over the years, representing a multitude of singular nonprofit cancer organizations.

 I was surprised, though, at the San Antonio Breast Cancer Symposium when I came upon Sandy Castillo, an advocate who is a spokesperson for several breast cancer groups, some of which are even somewhat competitive with others.


Her nametag identified her as with the Alamo Breast Cancer Foundation when she handed me a flyer for an event co-sponsored by Alamo. Then, during what began as a brief conversation, she mentioned several other national and regional advocacy organizations with which she was affiliated -- including Susan G. Komen, the National Breast Cancer Coalition, the Young Survival Coalition, the Research Advocacy Network, the Pink Ribbons Project, and CanCare.


About five years ago, she said, she was diagnosed with breast cancer a few weeks before her 40th birthday after moving back to Houston from Switzerland and while going through a difficult divorce.


By happenstance she discovered a small cyst and immediately went for a mammogram, which was inconclusive. Then, without a job and with limited short-term health insurance, she had a biopsy, which indicated cancer. Within days she had an appointment with a medical oncologist and following a lumpectomy of the stage 3 estrogen-positive DCIS she began chemotherapy.


But a gap before starting a new job and getting insurance meant waiting for radiation therapy.  And she decided not to get the suggested BRCA test because she would have to pay out of pocket and already knew she had cancer -- although later testing proved negative. At times her treatment options seemed to be based more on insurance coverage than best medical practice.


A few months into her treatment, a Houston-based nonprofit health services organization selected her as one of 30 faces of breast cancer for a local news broadcast during Breast Cancer Awareness Month.


That interview led to other television appearances, and Komen’s Houston chapter asked her to become a spokesperson, which led to media training to help her deliver the message:  “I thought breast cancer would never happen to me. If I can do it, you can do it. It’s not the end of the world, it’s not a death sentence, and you’re not alone.”


One day Castillo took a day off from her new job to hear Nancy Brinker speak during the Komen founder’s book tour for Promise Me: How a Sister’s Love Launched the Global Movement to End Breast Cancer. “Nancy inspired me to realize what I could be as an advocate. I was amazed at what she had done to pursue her mission and her promise to her sister Susan,” Castillo said, admitting she was speechless when meeting Brinker.


One thing led to another and Castillo, who kept a journal and blogged regularly about her cancer experience, was invited to join a panel discussion about support groups at a summit of collaborative Texas nonprofit breast cancer organizations.


She said she saw herself as a bridge builder helping to create movements, which she attributed partially to her undergraduate training in architecture. When her divorce was finalized and she received some settlement money, she decided to take a year off and dedicate herself full-time as an advocacy volunteer.


She joined CanCare, a nonprofit support network for survivors in Houston, which assigned her to work in an infusion center. She got involved with the Pink Ribbons Project; the Young Survival Coalition, where she served as a state leader in Texas; the National Breast Cancer Coalition (NBCC), attending Project LEAD; Alamo, for which she started the Houston chapter; and as a volunteer Girl Scout alumna, got involved in a fundraising event for breast cancer awareness with Houston’s (now-defunct) American Hockey League team, the Aeros.


She said that although this cross-pollinating among various organizations proved personally and professionally enriching, at times her attending events sponsored by certain groups raised eyebrows among the members of other organizations.


This year was an advocacy-packed year – she received 13 separate scholarships to attend conferences for young women involved with various breast cancer organizations. At the San Antonio symposium, she even managed, when she met AACR CEO Margaret Foti, PhD, to secure an invitation to the upcoming 16th Annual Scientist↔Survivor Program at the association’s Annual Meeting this spring in San Diego.


Armed with a business management certificate from San Jose State University, Castillo added another certificate in May from Rice University from the Leadership Institute for Nonprofit Executives, and is currently applying for what she calls PhD programs in “political health.”


She has served as a consumer reviewer for the Department of Defense’s Breast Cancer Research Program for Molecular Biology and Genetics Post Doctoral Fellowship Applications panel; as a Komen advocate in science; and has attended various summits and leadership conferences this year, spending time with James and Jimmie Holland, Sandra Swain, and Funmi Olopade, among other prominent researchers and clinicians.


Castillo noted that she had met both Texas Republican Senator Ted Cruz and House Democratic Minority Leader Nancy Pelosi to discuss NBCC’s proposed Accelerating the End of Breast Cancer Act of 2013; and at the ASCO Annual Meeting this spring, Julie Gralow asked her to speak at a Women’s Empowerment Cancer Advocacy Network (WECAN) event in Uganda in September about issues related to breast and cervical cancers.


Castillo also started lobbying with Alamo for Texas House Bill 149 in support of reorganizing the Cancer Prevention Research Institute of Texas (CPRIT). She said that after testifying before the Texas House Committee on Public Health about changing the bill’s wording to include having educated patient advocates on all CPRIT committees, she was told by a legislative aide that finding someone who was educated, a patient, and an advocate would be the “trifecta.”


“The six of us from Alamo were one of the only groups not asking the legislator for money -- we only wanted the wording to be inclusive” -- I told the aide there were six ‘trifectas’ standing right in front of him.”


Ultimately the wording was changed to include “educated patient advocates,” but when committee selections were made they consisted of mostly business people and physicians and not a single patient advocate, educated or not.


Castillo said she intends to continue enhancing her education as an advocate spokesperson, and hopes that one day all the volunteering leads to a full-time job.