Before we started our Living Cancer series, we went on NPR's Facebook page to ask people about their experiences in paying for cancer treatment. Over a hundred people from across the country responded.
We talked with some people by phone to learn about their stories.
Maureen Carrigg, who lives in Wayne, Neb., was diagnosed with multiple myeloma six years ago. Even though she says she was meticulous about staying within her insurer's network for care, she still ended up owing $80,000 in out-of-pocket costs.
"When you're in the hospital, you can't just put a notebook by your bed and write everything down," she said.
"I went into the cancer center's office with these bills and just started bawling because I couldn't figure out how I was going to pay it all back," she said. In then end, she had to tap her son's college savings account.
Tough financial decisions were common among those who shared their stories with us. For many, the threat of personal bankruptcy loomed large. Ginger Roethemeyer, a retired oncology nurse from Omaha, Neb., says she cashed out her 401(k) to pay off her medical bills quickly.
She was diagnosed with lymphoma in 2010. Chemotherapy drugs were the most expensive part of her care. As a nurse, and eventually a patient, Roethemeyer saw both sides of cancer treatment. Looking back, she said, "I think I could deal with the actual cancer far better than having to deal with the medical system and the cost of treatment."
Many people told us the financial cost of cancer treatment was something they preferred not to think about — at first. But paying for cancer care shaped the way they make daily decisions, and it also took an emotional toll.
Cindy Alsobrook, 42, was diagnosed with cervical cancer in 2013. During her second round of chemotherapy, she developed severe lymphedema, a painful swelling, and had to quit her job at a local shoe store. Her husband supports them by working three days a week as a shipping and receiving clerk.
"So now all the weight is on him to keep us afloat," Alsobrook said over the phone from her home in Seattle. "I think it's obvious that the financial hardship creates an emotional hardship, but it has a lot of layers."
Alsobrook would like to get back to work, to help with bills and for the emotional fulfillment. "It's easy to feel like you don't count," she says. "I know that I have a lot to offer the world, but I feel like I've been shelved because I've been sick."
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Our series is produced with member station WNYC, and with Ken Burns Presents: Cancer: The Emperor of All Maladies, which will air on PBS starting March 30. Check your local listings for broadcast times.