Woman With Aggressive Cancer Delays Treatment in the Name of Science

Dr. Kimberly Koss. Photo courtesy of Loyola University

Mother, grandmother, and biomedical scientist Kimberly Koss of Ohio is battling a rare and aggressive form of breast cancer, called triple negative — but has chosen to skip an initial round of chemotherapy in order to donate some of her deadly cells to science.

“It’s important research. Triple negative tumors are poorly understood, underfunded and have a high mortality rate, so hopefully this could help save lives in the long run,” Koss, 57, told Yahoo Health.

Though in the first days of her early May diagnosis she was “immobilized with grief,” Koss soon found motivation to contribute to science in her daughter and three granddaughters, ages 3, 5, and 6. “The clock is ticking with this disease, and we don’t know if there is a hereditary component,” she explained. “So to protect my daughter and my dear granddaughters, I needed to help find out.” She’s also set up a Facebook page, Hot Pink Activism, to help pressure Congress into triple-negative research, and launched a crowdfunding site to help pay for the research of her cells at Loyola University Chicago Stritch School of Medicine. With scientists already working to analyze her cells, she said, “Every day, that gives me hope.”

Triple negative breast cancer is especially aggressive, and is so named because the tumor cells test negative for estrogen, progesterone, and HER-2 receptors — making treatment difficult, as those receptors are the three main targets of attack with chemotherapy treatment. This form of breast cancer is also more likely to spread than other types, accounts for 10 to 20 percent of all breast cancers, and disproportionally affects African American women.

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Koss recently started a grueling 18-week course of weekly chemo in hopes of slowing the cancer’s growth, but it began more than two months later than doctors had recommended: While triple-negative treatment typically includes pre-surgery chemotherapy to shrink tumors and improve prognosis, Koss decided to have mastectomy surgery before the chemo so that scientists could harvest her unaltered tumor in order to create a usable cell line for research.

“This will be tremendously helpful in figuring out what causes this type of cancer, and how to treat it,” Koss’s friend and colleague Keith Jones, PhD told Yahoo Health regarding her tumor donation. Jones is heading the Loyola research team that’s creating the immortal cell line — laboratory-grown human cells that scientists use to test theories about the causes and treatment of diseases, in part by culturing those cells in mice. Still, Jones said he was of two minds regarding Koss’s decision, which she told him about only after her surgery, when he visited her in the hospital.

“It’s always a little scary to hear a friend say they were taking a chance on something that could cost their life or health,” Jones said. “I don’t know if, in the same situation, I could do the same. It’s very brave.” He added that the prognosis with this type of cancer is usually just a few months to two years.

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Immortal cell lines entered popular consciousness several years ago after Rebecca Skloot’s investigative book, “The Immortal Life of Henrietta Lacks,” highlighted the practice. Skloot tracked down the source of the first-ever such cell line — Lacks, a young black tobacco farmer with cervical cancer, whose cells were taken for research without her knowledge in 1951. They became known as HeLa cells, and quickly became invaluable to medical research, though their donor remained a mystery for decades.

Someone deciding to donate a tumor for cell lines “doesn’t happen all the time,” Jones said, particularly primary, or untreated, tumors, like Koss’s. Hers is the first that will be grown since the development of new gene-sequencing instruments a few years ago, he said, meaning there’s a good chance that, maybe a decade down the line, the lessons learned from Koss’s cells could lead to effective treatments or even a cure. “Part of her legacy,” Jones said, “will be what this does for other women.”

You can find out more about the Dr. Kimberly Koss Breast Cancer Research Initiative Fund, including how to contribute, here.