Written by Robin Warshaw, Contributing Writer
When you hear DeAnna Chenoweth lives in Miami, it’s reasonable to think she could find excellent cancer care at the large hospitals or centers near her home. That’s understandable to assume until you learn she lives in Miami, Oklahoma – not Miami, Florida. Living in a small town or rural area can make finding breast cancer care challenging.
There was a cancer center about 45 minutes away from DeAnna. “That was where most people went for treatment,” she says. At the time of her breast cancer diagnosis, however, the center and its hospital, in Joplin, Missouri, were shut down from severe tornado damage.
DeAnna, a sonographer at a small local hospital, was determined to locate breast cancer specialists – experts more often found in larger hospitals and cancer centers.
In her small town, DeAnna felt “everybody’s treated with the same recipe,” she says. She wanted to be sure her doctors would give a young woman the appropriate treatment, knew the latest research and would talk with her about it. It was important to her to find a team of providers she could trust and develop a relationship with throughout her experience. She also wanted access to all treatment options.
DeAnna began searching for care. Diagnosed at age 41 with stage IIB hormone receptor-positive and HER2-positive disease, she first saw a breast surgeon 90 miles away, in Tulsa. She left that office feeling displeased with the uncaring attitude she encountered. “I didn’t like the way they treated me or the other patients being seen that day,” she says.
The other surgeon she could see was not in her health insurance network, so hercosts for care would be much higher. A Tulsa cancer center also was not covered, her insurance company told her, but a related location near Chicago, about 600 miles away, was in-network.
She decided to make the trips to Chicago for treatment because she couldn’t afford out-of-network costs at the closer facility. So, instead of driving 90 miles for care, DeAnna drove 90 miles, then got on an airplane and flew for every treatment or procedure. The center in Chicago covered her flights because she could not get in-network coverage at their Tulsa hospital.
Flying to another city for care saved her money over out-of-network costs. “It’s crazy, but it’s the game you have to play,” she says. “When you’re talking about these hospital bills, that difference of even 10 percent makes a huge difference.”
As a Native American of Cherokee descent, DeAnna also received help with co-pays from the Indian Health Service (IHS). She now picks up most of her ongoing medicines, with no co-pays, directly from a nearby IHS facility.
Traveling for treatment was rigorous. Since her 20-year marriage ended shortly before her diagnosis, DeAnna was a single parent, raising a 12-year-old and 16-year-old twins, plus had a full-time job. “I felt like the ringmaster,” she says. “I asked myself, how do I keep all these things going?”
Some of DeAnna’s co-workers donated vacation or sick days to supplement hers. A large bake sale and Zumbathon event raised funds for her expenses.
Now 44, DeAnna thinks the number of affected young women living near her is unusual. She joined a breast cancer support group for young women when a friend of hers set it up. Her friend works in a Joplin mammography center. After 6 months, the group had about 40 members. They meet online and in person.
“I think I’m the oldest,” DeAnna says. One other woman is single. Most work, a few are at home with children.
Members have varying diagnoses and are at different points in their care. DeAnna recalls helping one 32-year-old woman who was about to have a mastectomy. “I showed her my drains and let her touch them. I said, “This is what you’re getting ready to do. Don’t be afraid.’”
When a member posted online about having her final chemotherapy session that day, another member dropped in and sat with her.
The group holds evening and daytime meet-ups, to let people attend when they can. They’re planning a weekend “slumber party” getaway to Branson,Missouri.
Having the group, says DeAnna, “is nice, because in my situation, I didn’t want to burden the kids.” She appreciates knowing other women affected by breast cancer who share her viewpoint and help each other.
“Some ladies will say, ‘My husband just doesn’t understand.’ And we say, ‘You don’t have to be all fuzzy and cupcakes here.’”
This article was supported by the Grant or Cooperative Agreement Number 1 U58 DP005403, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.