Cornell cancer researchers listen to patients' stories

Bob Riter
Lindsay France/University Photography
Bob Riter, director of the Cancer Resource Center of the Finger Lakes, at a Sept. 10 seminar on the journeys of cancer survivors. To Riter's left is cancer survivor Maki Inada.
Lindsay France/University Photography
Cornell students and members of the Cornell and Ithaca communities participated in the Sept. 10 meeting.

It is common, often mandatory for students training to be clinicians to interact with patients. Yet it’s quite unusual for researchers who develop biomedical treatments to ever communicate with those who are the target of their therapies.

“I’m actually a big novice when it comes to cancer. … I just want to hear a little bit about what people have to go through,” said Ryan Lake, M.Eng. ’15, at a Sept. 10 discussion between cancer patients and Cornell cancer researchers.

Lake, a biomedical engineering student, was joined by Cornellians focused on cancer research from a variety of departments including chemistry; biochemistry, molecular and cell biology; pharmacology; environmental toxicology; and veterinary oncology, along with cancer survivors and volunteers at the Cancer Resource Center of the Finger Lakes (CRCFL). At monthly meetings, the two groups share their experiences to open a direct line of communication between patient and researcher.

“We have terrific discussions in here. Last year we had presentations about angiogenesis, why does the physicist study cancer [and] genetic testing. Lots of really, really, good topics,” said Bob Riter, CRCFL executive director.

While the talks usually involve researchers presenting their findings in “lay” language, this meeting focused instead on cancer patients with particularly complex disease histories sharing their stories and answering questions. Many had faced multiple types of cancer along with recurrences, which meant they dealt with complicated treatments.

Maki Inada, a cancer survivor and assistant professor of biology at Ithaca College, described her unorthodox treatment for lung cancer. Specialized chemotherapy shrunk her 7-centimeter tumor considerably, allowing for surgical intervention. However, a left lobectomy and later wedge resection proved not to be enough, and she was also forced to limit her use of medications due to resistance mutations.

“I was so far off the curve of what was normal, or tested or researched that there was no data guiding what to do,” said Inada, who developed the cancer despite being a nonsmoker. After an additional surgery and recurrence, she had a lung removed.

“[Stories like Inada’s] help to illustrate some of the decisions that are made and some of the uncertainty involved in cancer treatment,” said Riter.

When prompted what she’d like to see researchers do as a cancer patient, Janet Pierce ’70 said: “It’s what we’re doing here; it’s communicating. There has been kind of a history of people working in a particular cancer and not looking for the connections between cancers or what drug will work in one spot and will also work on another cancer. And I think we’re doing more of that now. But there was a tendency for a long time for research to be a little too single-minded.”

As a teacher with Cornell’s Learning Initiative in Medicine and Bioengineering (CLIMB), lung cancer survivor Laura Austen knows this communication is key. She said it’s important for biomedical researchers to know that “even the little things,” like the PowerPort – the first implantable device for IV therapy – is a “blessing” to countless patients.

“With all the new research, all the new knowledge … we’re getting places, finally,” Austen said. “They give you your five-year or your 10-year diagnosis, but lung cancer five or 10 years ago isn’t what it is today. I rely more on what people are coming up with now. And it’s changing and it’s continuing to change.”

Natalie O’Toole ’16 is a writer intern for the Chronicle.

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