Why the Stories We Tell Matter

ACCC 36^th National Oncology Conference featured speaker author and journalist Mary Elizabeth Williams held the packed room rapt with the story of her patient experience. She was diagnosed and treated for stage II melanoma in 2010. One year later, the cancer returned. This time the melanoma was stage IV. At that time, patients with stage IV melanoma had about a five percent chance of surviving five years, Williams said.

And yet, nine years later (including two years on a clinical trial) Mary Elizabeth Williams told attendees she remains cancer-free. In a frank and down-to-earth talk titled, “Results Not Typical,” Williams shared her experiences of going through treatment as a mother with young children and one of the first patients recruited for an immuno-oncology combination drug therapy clinical trial. “I’m still considered an exceptional responder, which I love because I’m Type A,” said Williams. But she added, “I hope and pray that there will come a day very soon that what happened to me won’t be considered exceptional.”

“How did I win the cancer Powerball?” asked Williams. “I’m white. I’m college educated. I live in Manhattan, a subway ride away from one of the best cancer facilities in the world. I had no other pre-existing conditions. I’m in great health. I trained for and ran a marathon while I was in treatment. I’m a journalist trained for asking questions [as part of my profession] with a flexible job and a supportive husband. I was in a checkpoint inhibitor trial under the direction of a physician who is a Nobel Prize winner. I’m not the norm.”

Results that are not typical bring responsibility, Williams said. One responsibility that she and oncology care providers have to remember: “I don’t represent the patient population. I don’t represent the patient experience. Not even close. Not at all.”

Williams was reluctant, at first, to join a support group. But conversation with a friend led to the realization that she wasn’t the only family member who might need “not to be fine” all the time. As a member of Gilda’s Club, Williams listened to patients’ stories about how long it took to get to treatment and about spouses getting fired for taking too much time off work. “Stories about raising your kids, taking care of your parents, and trying to hang on to your job,” she said. “And if you’re interested in clinical trials, [the struggle to] just find out about them.”

While Williams is incredibly grateful for the care she received and the scientific advances and clinical trial opportunity that led to “results not typical,” she closed out her remarks with a heartfelt reminder that “the first line of defense [against cancer] is going to be communication.”

“We’re hyped up about data, genetic testing, AI, and I’m totally down for all that,” affirmed Williams. “But I also know at the base of everything we need to be looking at the patients, the real patients.” For clinical trials to become more inclusive, the barriers to access must come down: patient distrust or wariness of clinical trials, cumbersome and lengthy enrollment processes, and lack of sufficient support on both the patient and clinical level.

“I had a great team of the best physicians in the world, and I was completely overwhelmed by my 23-page consent form. I signed that document, and I barely knew what it meant. . . so talking to patients in their own language is so important.”

In the end, Williams says communication boils down to “making sure patients and providers are on the same page. Telling the same stories, because stories are how we make decisions. Communication is about empathy and being clear. It’s not optional.”
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Mary Elizabeth Williams is author of A Series of Catastrophes and Miracles: A True Story of Love, Science, and Cancer, part memoir and part a behind-the-scenes look at the new world of scientific research.