Anne Koller was diagnosed with late-stage colon cancer in 2011 and has been fighting it since.
But it's not just the cancer she's fighting. It's the bills.
"Think of those old horror flicks," she says. "The swamp creature ... comes out and is kind of oozy, and it oozes over everything."
When she was able to work, Koller, who just turned 65, was in the corporate world and safely middle-class, with health insurance and plenty of savings.
At first, she was too sick to deal with the bills. They piled up.
"You start looking at these bills," Koller says, "and, as much as you know it's expensive, the shock itself is like, 'What?' "
Her response was to begin asking her doctors about the cost of the treatments they recommended.
Middle-income patients are feeling the weight of that financial burden more than ever, says Dr. Neal Meropol, an oncologist at University Hospitals in Cleveland. He took over Koller's care a couple of years ago.
"Patients are weighing this in their calculus now," Meropol says.
High-deductible health plans and soaring drug prices are to blame, he says, and a sea change happened when a new generation of drug therapies got FDA approval for treatment in the late 1990s.
"We went from drugs that cost a few hundred dollars for a course of therapy that might be a month or six months or a year, to drugs that were costing $10,000 a month," Meropol says.
Total cost of cancer care in the U.S. is projected to reach more than $150 billion by 2020, according to the National Cancer Institute. The U.S. Centers for Disease Control and Prevention released a study last year that found that, compared with people without a cancer diagnosis, cancer survivors are less likely to work and more likely to struggle financially. Another study, out of Washington state, found that the longer a cancer patient survived, the higher the rate of bankruptcy.
"We talk about hair loss," de Souza says. "We talk about numbness and tingling in the hands and feet. We talk about, 'This chemotherapy will cause low blood counts.' Right. Should we also be talking about, 'Well, this chemotherapy is expensive'?"
He and Meropol are part of a growing field of researchers studying the impact of costs for cancer patients.
Koller will tell you cancer does cause financial stress.
"Here's what happens," Koller says. "I was talking about that swamp thing ... but you know, OK, you go to collections. You end up with a court thing. I had been talking to the hospital, asking for help — nothing, nothing. Finally, they went to a sliding payment scale."
Her credit is ruined. So she's driving an old car. Small expenses, like an Internet connection, are out of the question. And there are other challenges.
"Socially, things change a lot," she says. "You talk to people and, if you dare, say, 'God, you know, I can't afford this,' for instance." Or, " 'Let's go out to lunch,' on the day you can eat. You ... think twice about it."
Koller says she wishes more financial information had been given earlier in her treatments. She is now using the very last of her savings to pay the bills — and, still, some are going unpaid.
This story is part of NPR's reporting partnership with WCPN and Kaiser Health News.
STEVE INSKEEP, HOST:
When people are diagnosed with cancer, they face burdens on their health and also on their minds. There's the fear of dying, the turmoil of treatments and just carrying on with daily life, not to mention medical bills and dealing with collection agencies. Some doctors are taking notice of the financial burden. From member station WCPN, Sarah Jane Tribble reports.
SARAH JANE TRIBBLE, BYLINE: Anne Koller was diagnosed with late-stage colon cancer in 2011 and has been fighting it since. But it's not just the cancer she's fighting. It's the bills.
ANNE KOLLER: Think of those old horror movies - the swamp creature that comes out and is kind of oozy, ruining everything in its path.
TRIBBLE: Koller, who just turned 65 years old, is petite and sports a stylish auburn wig. When first diagnosed, Koller was too sick to deal with the bills. They piled up. When she did begin to open them...
KOLLER: You start looking at these bills, and as much as you know it's expensive - the shock. It's like, what?
TRIBBLE: Even though she had insurance, what she owed climbed into the hundreds of thousands of dollars. She started asking her doctors more about the cost of the treatments they recommended. Dr. Neal Meropol is at Cleveland's University Hospitals, where Koller began the latest phase of treatments. And he says her approach is increasingly common.
NEAL MEROPOL: Patients are weighing this in their calculus now.
TRIBBLE: When the cost enters the conversation, Meropol says doctors face a big question.
MEROPOL: What is the value of a new cancer therapy? In the past, we would readily recommend a new treatment that increased life expectancy by, say, a couple of months, without regard for what the cost implications for the patient are. We now realize that there's more to it.
TRIBBLE: Meropol says the issue first caught his attention in the late 1990s, when a new generation of cancer treatments were approved. They commonly cost $10,000 a month. High prices coupled with high-deductible health plans are taking a societal toll. The National Cancer Institute says the total cost of cancer care in the U.S. will be more than $150 billion by 2020. Those costs add up for individuals with or without insurance. The federal government found cancer survivors were less likely to work and more likely to struggle financially. Another study found that the longer a cancer patient survived, the higher the rate of bankruptcy.
JONAS DE SOUZA: We talk about hair loss. We talk about numbness and tingling in the hands and feet. We talk about this chemotherapy cause low blood counts, right? Should we be talking also about, well, this chemotherapy's expensive?
TRIBBLE: Jonas de Souza at the University of Chicago says doctors should talk about cost like other side effects of therapy. He says the financial stress of cancer treatment could cause depression, or worse, cause patients to back off their treatments. Anne Koller will tell you cancer causes intense financial stress.
KOLLER: OK, you go to collections. You end up with a court thing. I had been talking to the hospital, asking for help - nothing, nothing. Finally, they went to a sliding scale.
TRIBBLE: Her credit is ruined, so she's driving an old car. Small expenses like an Internet connection are out of the question, she says.
KOLLER: Socially, things change a lot. You talk to people if you dare say, God, you know, I can't afford this. Or friend says let's go out to lunch on the day you can eat. You think twice about it.
TRIBBLE: She says it would've been good for someone early on in her treatments to warn her about the cost.
KOLLER: Up front, the numbers need to be out there.
TRIBBLE: Koller is now using the very last of her savings to pay the bills. And still, some are going unpaid. For NPR News, I'm Sarah Jane Tribble in Cleveland.
INSKEEP: This story is part of a reporting partnership with NPR News, WCPN and Kaiser Health News. Transcript provided by NPR, Copyright NPR.