Saved by Self-Advocacy

A mother diagnosed with stage IV breast cancer didn't stop until she found the care she needed at UF Health.

When it comes to your health, you are your own best advocate.

That became crystal clear for C.J. Jackson-Gonzalez, 28, when a biopsy revealed stage III triple-negative breast cancer in April 2016. Six months had passed before her Southern California health care provider even ordered a biopsy. It was supposed to have been nothing serious.

“If nobody feels like this is something to stress about, then I’m not going to stress about it,” Jackson-Gonzalez said, recalling her frame of mind in the early stages of her cancer journey.

Challenging cancer care

When the biopsy confirmed it was cancer, Jackson-Gonzalez’s attitude changed. As a single mother of an 11-year-old boy, survival was imperative, but ongoing, debilitating chemotherapy was not an option. After the delayed diagnosis, she was not going to sit back and blindly take anyone’s advice anymore. She went forward with an immediate double mastectomy, but was extremely critical of her future treatment.

“I had to ask questions and make them explain to me what’s going on,” Jackson-Gonzalez said. “I had to do my research and try to align it with what they were saying. These are things that matter because at the end of the day it is my life on the line.”

Jackson-Gonzalez involved herself deeply in her own care. She needed to find a provider willing to work with her and her self-described “bullheadedness.” It was this outlook, in part, that led her and her son, Jeffrey, to leave their California home shortly after the mastectomy. They returned to Jacksonville, where she had spent time working a few years prior.

Her first oncologist in Jacksonville told her she didn’t need to be scanned for cancer because she did not have any physical signs of illness. But in San Antonio, where she had traveled for reconstructive breast surgery, her surgeon had to abort the procedure when he discovered cancer in the lymph nodes surrounding her lungs.

A subsequent PET scan and MRI revealed the cancer had progressed to stage IV. Within days, she underwent emergency surgery to remove a 2.5-centimeter brain tumor. Her neurologist gave her a year to live, with or without treatment.

Three separate oncologists agreed indefinite, intravenous chemotherapy was the best course of action. Jackson-Gonzalez wasn’t having it. That treatment plan would leave her exhausted and unable to care for Jeffrey.

“That’s not going to work,” she told them. “You need to give me a timestamp of when we are starting and when we are ending because we are not going to just keep doing that.”

Her research indicated an aggressive combination of two chemotherapy drugs, administered within a defined window of time, may be more successful against triple-negative breast cancer. They shrugged her off.

“This is how we treat stage IV,” one of them told her. “When you are stage IV, you’re on IV chemo indefinitely.”

Jackson-Gonzalez, who was younger than most patients with stage IV cancer and had exhibited very few physical manifestations beyond the original lump in her breast, viewed her own case as unique. The standard treatment was unacceptable to her, especially when her own research showed other options were available if only she could find a willing provider.

Persistence pays off

She sought another second opinion — call it a fourth or fifth opinion — from UF Health Hematology and Oncology – Jacksonville, where the providers were receptive. They listened, explained and worked with her. Together they charted a course that would allow her to continue working as long as possible, as well as driving her son to school, soccer practice and piano lessons. Her UF doctors opted to proceed with a 12-week course of the two chemotherapy drugs she had learned about in her research.

Her UF doctors explained that, yes, indefinite, IV chemotherapy is how stage IV is traditionally treated, but that there are thousands of subtypes of triple-negative breast cancer. The standard approach may not apply in all cases, particularly with a young patient.

“Even a stage IV patient can be controlled for a long time, as long as we have a well-coordinated, multidisciplinary team and a patient’s participation,” said Fauzia N. Rana, MD, chief of the division of hematology and medical oncology for the University of Florida College of Medicine – Jacksonville.

She began chemotherapy with UF Health in July 2017. Through 10 weeks of treatment, she continued working. She continued to drive Jeffrey to Hendricks Avenue Elementary School, to his piano lessons and across town to the beach for soccer practice, where she would work remotely from her car.

A PET scan in August revealed signs of hope, but there was still more work to be done. Radiation began in October — 30 rounds daily for six weeks. Jackson-Gonzalez finally took some time off work, but was there for her son throughout her treatment.

“He did try to act out a couple of times,” she said. “He almost got into a depressive state, where he didn’t want to play soccer, didn’t want to play piano anymore and didn’t care about school. I told him this is a lot for both of us to carry, but your fear is lying to you. You’ve got to let it go and focus on what you need to focus on.”

Jeffrey had an A/B average that fall. He will be taking a year off from soccer, but earned a scholarship for his piano lessons. As for Jackson-Gonzalez, January tests revealed she was cancer-free. She is currently in remission, with no evidence of the disease.

Satisfying solution

The pair celebrated with a trip to New York City, a first for both of them, before she started taking an oral chemotherapy drug used to reduce the risk of cancer recurrence. Her doctors remain confident that she should expect to live another 15 to 20 years, or longer. “Nowadays, late-stage cancer can be treated as a chronic disease, and patients can have a good quality of life,” Rana said. “This patient is a perfect example of new treatment options and of a patients’ active participation through the treatment process.”

She is thankful for her providers at UF Health, who were caring enough to listen and to see her as an individual and more than another stage IV case.

“I have fought with three or four doctors,” Jackson said. “I have fought with my family, who said you have to just listen to your doctor. Everyone wanted to talk about what would happen if I didn’t listen to the doctor. Fortunately, my UF Health providers were willing to listen to me and address my needs, providing me with the best results.”