A leukemia survivor’s perspective on aligning care with what matters most
When Britt Mayo received a phone call from his doctor at 7:15 a.m. after a routine physical, he knew it wouldn’t be good news.
“I remember hearing the diagnosis and my brain going completely blank,” he says. “In that moment, my world shrank. I went from long-term life plans to wondering if I’d make it to the next year.”
Diagnosed with chronic lymphocytic leukemia (CLL) in 2010, Britt quickly realized that understanding his treatment options wasn’t enough. He needed his care team to understand what mattered most to him.
Protecting what matters most
Britt’s top priority was clear: live as long as possible — without compromising the parts of life that defined who he was.
Protecting the function of his hands was essential for the lifelong pianist and computer user. He wanted to avoid neuropathy. He also hoped to prevent cognitive side effects, such as chemobrain, that could affect his work and thinking. With family spread across the globe, travel mattered deeply to him and his wife, Diana.
At the time, the standard treatment for CLL involved chemotherapy. Britt was hesitant. Through open conversations with his care team, he learned about an emerging clinical trial that might be available in the future, allowing him to potentially avoid chemotherapy.
Together, he and his care team developed a watch-and-wait strategy designed to safely delay treatment until he could qualify for the clinical trial.
Why early conversations about cancer care matter
Looking back, Britt believes those early conversations were critical.
“If I had received even one round of chemotherapy, I would have been ineligible for the trial,” he says. “That conversation changed everything.”
Britt eventually enrolled in an immunotherapy clinical trial and achieved remission — without compromising his life expectancy or the activities he valued most.
Today, immunotherapy has become a standard treatment for many patients with CLL. For Britt, aligning care with his priorities brought emotional relief as well as clinical benefits.
“Before we had that conversation, there was tension between what I wanted and what I thought I had to do,” he says. “Once the plan matched my goals, I felt at ease. That’s a liberating feeling.”
He has since spoken with hundreds of fellow patients during clinical trials and clinic visits. Many, he says, didn’t realize they had choices.
“I can’t tell you how many times people told me they didn’t know there were options,” he says. “Early communication could have sent them down a very different path.”
He emphasizes that every diagnosis is different. Some cancers have multiple treatment options, while others require a specific approach.
“At a place like UT MD Anderson that has deep experience and offers many treatment approaches, patients often have options,” he says. “But even when choices are limited, understanding a patient’s goals helps the care team support quality of life, symptom management and family needs.”
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A leukemia survivor’s perspective on aligning care with what matters most
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