Komen funds research to improve length, quality of life for 'forever fighters'
Posted May 4
Kohl, the executive director of the Susan G. Komen North Carolina Triangle to the Coast chapter, is both a breast cancer survivor and one of those who Komen calls "Forever Fighters," those living with a cancer that can't be cured.
As she speaks with racers and donors, Kohl bonds through experience. She has what's called metastatic breast cancer, where cancer cells have spread through the lymph nodes to other parts of the body.
"It's not considered curable with our current techniques, but it is certainly controllable," said Dr. Lisa Carey of UNC Lineberger Comprehensive Cancer Center.
"The goals of care for metastatic breast cancer, unlike early breast cancer where we're trying to cure it, we're trying to control it and make it a chronic disease and do that effectively in ways the patient feels well and can live her life fully."
Most cases of metastatic cancer develop months or years after a person has endured a first cancer diagnosis and treatment.
Kohl says, "That's what Komen is doing is raising money for research so that we can all find a cure. I'm on my second battle."
At an April awareness event held at the North Carolina governor's mansion, Kohl met some of those fellow fighters and took heart in their stories of hope.
"I'm sitting with several women who are metastatic breast cancer, one woman who is metastatic seven years," she said.
That woman reached out after seeing Kohl's story on WRAL-TV.
"It just filled her heart and gave her a lot of hope," she said.
Those with metastatic breast cancer can live for a decade or longer, but the average for living with metastatic disease is only a few years.
"The average is still only a few years," Carey said. "We want it to be decades for everybody."
In her work, Kohl is also surrounded by leading researchers, doctors and patients talking about new medicines and living longer with the disease and with better quality.
"My oncologist told me a couple weeks ago when I was starting to question our path of treatment, he said, 'You know, the goal for metastatic breast cancer is to live long and live well,'" she said.
Carey added, "If this is a chronic disease, the things that we do to help patients have to be really tolerable. You can't make the patient sick and consider that a success."
That is what Kohl is fighting for, both personally and professionally.
"Ten years ago, 12 years ago, there just weren't many of us around to be able to talk about it, and now there are, and we're going to be heard," she said.
Last fall, Komen announced a nationwide goal to reduce breast cancer deaths by 50 percent in 10 years. Kohl says the way to do that is to treat metastatic breast cancers with better medications and treatments.
In fact, she's on a new drug that was accelerated to market because of its success.
"It wasn't available two years ago, and that's huge for me," she said. "Hopefully it will work for a few years then I'll have something else I can take."