“We found something unusual.”
Medha Deoras-Sutliff was newly married and just 26 years old at the time of her first breast cancer diagnosis in 1993: ductal carcinoma in situ. She was 36 when she was diagnosed with invasive ductal carcinoma and underwent a mastectomy and four rounds of chemotherapy, and she has undergone screening every year since. “I have lived with breast cancer—two diagnoses—for half of my life,” she said in this interview at the San Antonio Breast Cancer Symposium where she joined forces with other patient advocates like herself who are part of the Alamo Breast Cancer Foundation’s advocacy program. In this video she shares her personal journey with diagnosis and treatment.
“I didn’t really acknowledge how powerful the patient voice could be.”
With a background in public health, Ms. Deoras-Sutliff understood the value of health education and research, but patient advocacy wasn’t something she’d thought much about. After her second breast cancer diagnosis, however, she felt compelled to learn as much as she could about cancer and her diagnoses.
“I just started reading. I felt … a fire in my belly,” she said, describing her early work as an advocate and the process of learning to speak on behalf of young women affected by breast cancer as a whole. “It’s very hard after you’ve been through something so emotionally and physically challenging to speak about ‘we’ and not ‘I.”
That experience introduced her to “an army of women” who were working as advocates, and opened the door to her work in legislative advocacy, which was driven by an interest in how research funding is distributed.
“Who decides where the money goes in breast cancer research? That was particularly interesting to me because there’s a lot of money, there’s a lot of funding … but where is that money going, who decides that?”
“We hope—we hope–that with support, participation, focus on getting the research dollars to the right place, that we will ultimately come to a cure. So I think that’s really what drives me.”
Discussing more about the importance of legislative issues, Ms. Deoras-Sutliff shared additional details of her work in legislative advocacy.
“The largest funder of cancer research is the federal government in the U.S.,” she said. “Our representatives, our congress members, are there to vote and decide where that money goes, but who are our congress members supposed to listen to? Their constituents–well, that’s us.”
There are many opportunities to go “on the hill” and talk about research and legislative priorities that benefit women affected by breast cancer. “That’s also what keeps me going,” she said.