Written By Robin Warshaw, Contributing Writer
Although she was a nurse, Catalina Tamayo admits she didn’t really understand what it meant when she was diagnosed with HER2-positive metastatic breast cancer at age 31. So she’s not surprised that some of her co-workers don’t understand either.
“When I say I was diagnosed four years ago as stage IV, they say, ‘Well, you’re cured now, right? Because you look fine,’” says Catalina, who lives in Petaluma, California with her 9-year-old son. “I’m constantly having to explain to my fellow nurses and doctors (if they’re not in oncology) what it is to have metastatic disease.”
Outside the medical profession, more people don’t get it. They ask when her chemotherapy will end. “I have to educate them that I’m always going to be getting some kind of treatment. That if I stop, then the cancer will grow and I’ll die faster.”
After diagnosis, Catalina’s oncologist urged her to join a phase I clinical trial at a hospital in nearby San Francisco. The trial gave her a standard chemotherapy medicine but added a new medicine under study, which she took as a pill. She also received trastuzumab (Herceptin).
During 6 months of weekly trial treatment, she developed severe nerve pain from the chemotherapy. Her scans showed no evidence of disease. “I told the doctor I need a break,” says Catalina. “I was thinking about my quality of life.” She left the trial, switched to other chemotherapy and stayed on trastuzumab.
Catalina’s son had just begun kindergarten when she was diagnosed. “As long as he’s had memories, he’s only remembered me with cancer,” she says.
These days, he doesn’t want to talk about her breast cancer. He gets sad when she can’t go on school trips like other parents because she has doctors’ appointments. He asks why he can’t have a sibling, although he understands she is unable to have more children because of ongoing treatment.
Catalina and her son are very close. She encourages him to do things with other people, but he resists. “I don’t know if it’s a fear of me not being here,” she says. “I’m trying to get him to be more independent.”
Her family lives 2 hours away. Before breast cancer, she drove to see them, but treatment, work and financial strain made that too hard. “My family doesn’t drive out here because they’re really poor and can’t afford the gas,” says Catalina.
She’s also lost connection with some people she once considered friends. “When I was first diagnosed, I asked a friend to take me to chemo. She said, ‘I already made a hair appointment for that day.’”
Catalina attended LBBC’s Annual Conference for Women Living with Metastatic Breast Cancer in 2015 and other conferences. She finds support in online groups for young women with metastatic disease. “It’s kind of a sisterhood,” she says, where she can talk about worries and frustrations, ask questions and share suggestions. “We all help each other.”
A New Job
Most of Catalina’s medical bills were covered while she was in the clinical trial. After switching treatment, her health insurance from work paid part, but out-of-pocket and co-insurance costs created medical debt. She changed jobs, now pays her own health insurance premiums and has fought with the insurer about wrong charges and coverage denials.
Catalina was hesitant to talk about her diagnosis at her new job as a medical-surgical nurse. Often assigned to post-mastectomy and other cancer cases, she gradually opened up about her experiences to patients and co-workers. Telling her story in this setting inspired her to work in chemotherapy treatment. She’s now waiting for her employer to approve funding so she can take the classes and training she needs to become a certified oncology registered nurse
“I feel like because I know what it’s like to have cancer, I have a better understanding of what people are going through,” she says. “I can better empathize with them.”
Learn more about clinical trials for metastatic breast cancer.
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.