Learning to Understand Breast Cancer Research
Do you speak Research? Gayla Little didn’t know the language before her Stage IIIB Inflammatory Breast Cancer (IBC) diagnosis in 2000 at age 44. “When I was first diagnosed I got into a clinical trial immediately. I didn’t know anything about that world of research.” But Gayla quickly began immersing herself in the language.
She credits her oncologist with giving her hope despite the dismal prognosis for IBC. “I always looked forward to chemo because I saw my oncologist right before the treatments, and I always had hope when I left him.” He told me, ‘Whatever you decide, don’t look back.’”
I met Gayla online not too long after her diagnosis when she joined a mailing list support group that I belong to. She was learning to speak the language of research as she asked the group questions. In fact, her first letter asked about research studies on mastectomies. She wrote, “I have been searching for studies comparing mortality of women who did not have a mastectomy with the rest of the ibc world and so far I have only found a vague reference in a journal from England . . . .“
After three months of dose dense chemo with Adriamycin and Taxotere, she had a double mastectomy and learned she had 8 positive lymph nodes, so it was back to more chemo, this time CMF. About three months into the second round of chemo, her doctors realized that a scheduling mistake had missed doing a bone scan early in her treatment.
The bone scan discovered that her breast cancer had spread to her spine, a condition often referred to as bone mets. She was now Stage IV, but no one knew if those bone mets had been there all along, or whether they had grown while she was on chemo. If they had been there from the beginning, she had about a 4% chance of long-term survival. If they were new, her chances, according to the doctor, were zero. Zero was not acceptable to Gayla—she had an 11 year-old daughter and 15 year-old son to raise--so she kept doing research. She went to the medical journals herself and found an old study that said 20% of breast cancer patients with metastasis to the bone go into remission. Gayla had hope again.
Gayla was also researching the Bible, looking for stories of healing. She credits prayer, research, and the clinical trial that gave her access to the cutting edge treatment with helping her get well. Stage IV metastatic cancer is considered a chronic disease, but there has been no evidence of disease (NED) since Gayla finished treatment.
As she started to gain more energy following treatment, Gayla became more active in the work of the Inflammatory Breast Cancer Research Foundation (IBCRF). She works on the Board of Directors to advance its mission to help researchers find the cause of inflammatory breast cancer and coordinates the response team that contacts people who have called or written IBCRF. She traveled to Washington to take the National Breast Cancer Coalition’s training on how to advocate for breast cancer issues on Capitol Hill.
But she realized that she still wasn’t fluent in Research. “When I was a social worker, I learned early to speak the language of the people I worked with,” she says. She is not talking about English, Spanish, or Chinese, but about the way people talk. She found it wasn’t helpful to use religious language if her clients didn’t. She had to talk about the subjects that interested them and use metaphors that applied to their own lives.
In August 2007, Gayla had an opportunity to participate in the National Breast Cancer Coalition’s Project LEAD Institute. These workshops, held in different parts of the country every year, give cancer advocates a chance to learn about breast cancer research and begin to learn how researchers think and talk. The first two days, Gayla received a crash course in the biology of cancer. The speakers were research scientists who were excellent at explaining complicated concepts to lay people. The participants went to a research facility and saw the labs and experiments. Gayla was dismayed to learn that the results of a lab experiment might take 20 years to turn into a new treatment.
“Participating in Project LEAD taught me to speak the language of researchers,” says Gayla. The idea is to bridge the gap between the patients who understand what it is like to have cancer and the researchers who are looking for causes and cures. In November, Gayla will go to Clinical Trials Project LEAD, an advanced four-day course designed to teach people to understand and improve clinical trials research.
The research of the scientists who designed the clinical trial in which Gayla participated helped her become one of the few Stage IV patients with bone mets who achieve NED status for more than five years. Now she’s using what she learned with Project LEAD to explain about cancer to the women who write and call the IBCRF for information. She’s speaking Research.