Read Time: 5 minutes
Takeaways:
- Brittany鈥檚 advocacy ensures that patient experiences influence research, clinical trials, and treatment design at Huntsman Cancer Institute and beyond.
- Her journey highlights the importance of resilience and hope鈥攚hile honoring friends who faced breast cancer alongside her.
Impact: Through programs like the Breast and Gynecologic Cancers Research Advocate Committee, Huntsman Cancer Institute is pioneering a model where patients actively guide scientific research. This approach ensures that discoveries are not only clinically sound but also meaningful to the people they are designed to help.
Being a patient research advocate was never something Brittany Lee imagined for herself. After two cancer diagnoses, a debilitating muscle disease, and the loss of close friends, she discovered that advocacy was not only a way to process her own experience but also a way to change the future for others.
鈥淲e鈥檙e the ones living it,鈥 she says. 鈥淚鈥檓 grateful for the treatments that kept me here. But I live with some harsh side effects, and those could affect my longevity and quality of life. If I can help my daughter鈥攐r someone else鈥檚 daughter鈥攈ave better options, I want that to happen.鈥 For her, the power of advocacy lies in ensuring that every patient鈥檚 voice shapes the science, care, and compassion that define cancer treatment.
A Wake-Up Call
Brittany was a relatively healthy mother when her 21-year-old daughter was diagnosed with two benign fibroadenomas.
Though stressful, the family chose watchful observation, staying cautiously optimistic. Soon after, Brittany鈥檚 aunt鈥攚ho had ovarian cancer鈥攃alled to share that she carried the BRCA1 gene mutation. She urged genetic testing. With her father already gone and family health history incomplete, she agreed, not for herself but for her daughter鈥檚 future.
A Pain That Changed Everything
At the genetic counseling appointment, Brittany mentioned a persistent pain in her chest. 鈥淚 understand cancer isn鈥檛 usually painful,鈥 she told the counselor. The reply鈥斺淚t isn鈥檛 always鈥濃攕tayed with her. Encouraged by her daughter, who had discovered her own lump through self-examination, Brittany checked herself and felt something unusual in the same place where the pain had been.
Her gynecologist quickly ordered a diagnostic mammogram, her first mammogram ever, which led to a biopsy. Just hours later, she boarded a plane to San Francisco to celebrate her birthday. A few days later she was relieved to receive the good news: Her BRCA test was negative. But two days after her birthday, everything shifted. The biopsy confirmed stage 2B grade 3 triple-positive invasive ductal carcinoma.
Treatment and Complications
Brittany began chemotherapy and underwent a double mastectomy, followed by many surgeries that next year because of complications. Declared 鈥渃ured鈥 a year later, she wanted to believe it. But complications persisted, and in 2020, another blow came鈥攁 diagnosis of necrotizing autoimmune myopathy, a rare muscle disease that left her bedbound and then in a wheelchair for months.
鈥淗ope is the only thing that kept me going sometimes,鈥 she says. 鈥淚 tend to be an optimist, but when I was really sick, it was hard to find that. Being a dancer my whole life, I faced the possibility of never walking again. However, there was hope that I鈥檇 be on the other side of this and have more time.鈥
Finding Care, Finding Her Voice
Determined to reclaim her care, Brittany transferred to Huntsman Cancer Institute. There, she says, she felt truly seen and heard. Her oncologist, Mei Wei, MD, worked collaboratively with colleagues to address her complicated case. 鈥淢y tumor didn鈥檛 fit in a specific bubble. Dr. Wei was always discussing my situation with her team. That actually gave me reassurance. People I don鈥檛 even know had a hand in my recovery.鈥
Huntsman Cancer Institute became the place that not only guided her healing but would later become the place where she helps guide others.
A Second Diagnosis
A re-evaluation revealed missed residual cancer cells. A CT scan done at the request of her pulmonologist soon after found metastasis near Brittany鈥檚 chest wall. On July 1, 2021, she was diagnosed with stage 3C, HER2-positive, hormone receptor鈥搉egative breast cancer. More chemotherapy was followed by radiation. Though immunosuppressive medications left her dangerously neutropenic and hospitalized during her birthday week, she eventually heard the words she had longed for: no evidence of disease.
From Patient to Advocate
That milestone sparked a new chapter. Brittany had already been part of the Young Survivor Coalition since her first bell-ringing and had attended a . In 2022, she was accepted into Huntsman Cancer Institute鈥檚 Breast and Gynecologic Cancers Research Advocate Committee, where she began shaping research with the patient voice.
She鈥檚 very impressed by the researchers that have presented to the committee. She鈥檚 watched investigators adjust grant proposals and clinical trial designs after listening to the committee鈥檚 feedback. 鈥淭hey鈥檒l say, 鈥榃e hadn鈥檛 thought of that,鈥 or, 鈥榃e鈥檙e going to add that in.鈥 They鈥檙e so open to us,鈥 she explains. 鈥淚t matters.鈥
Through the National Breast Cancer Coalition鈥檚 , a rigorous science-based training program, Brittany deepened her ability to contribute to research and policy. She was chosen to be a Living Beyond Breast Cancer Young Advocate leader for 2025鈥26 and will attend the San Antonio Breast Cancer Symposium this December as an Alamo Scholar. She will also be part of NBCC鈥檚 Public Policy training this fall.
Honoring Friends, Redefining Resilience
Advocacy, however, comes with heartbreak. In the span of six weeks, Brittany lost three of her close friends鈥擲hellie, Krista, and Suzanne鈥攁ll of whom had lived for more than a decade with breast cancer. Their deaths deepened her resolve. 鈥淚 do this work to honor my friends because they would do it if they were still here. We aren鈥檛 numbers or statistics. We鈥檙e people. Our lives matter.鈥
Brittany reflects differently now on the words 鈥渉ope鈥 and 鈥渞esilience.鈥 鈥淏efore diagnosis, they had less weight. I hoped to go on vacation or get my work done. Now I lean more on faith and trust.鈥
Through her challenges she says she found faith in God and felt her life wasn鈥檛 just about her anymore.
鈥淧eople often call me resilient.鈥 While she understands the sentiment, she gently clarifies: 鈥淩esilience wasn鈥檛 a badge I chose to wear鈥攊t was the only path forward.鈥 Her strength wasn鈥檛 born from choice, but necessity. Yet what she hopes for now is for her story to be a light鈥攖o help change the trajectory for the better for anyone facing a breast cancer diagnosis.
A Purpose That Endures
Brittany鈥檚 鈥渨hy鈥 is clear: her children, Sierra, Keaton, and Ethan, who became caregivers as teenagers, the memory of the friends she has lost, and her hopes to extend the lives of her many friends living with metastatic breast cancer by being a patient research advocate. 鈥淎ll of that pain helped me find my purpose,鈥 she says. 鈥淚 hope my journey encourages others to ask questions, to advocate for themselves, and to know they are not alone.鈥
鈥淚 hope my journey encourages others to ask questions, to advocate for themselves, and to know they are not alone.鈥
Today, her purpose also extends to her work at Huntsman Cancer Institute, where she serves as a surgery scheduler for the head and neck surgical oncology team. Every day, she draws on her own experiences as a patient to support other patients.
For her, advocacy is more than survival鈥攊t is about dignity, compassion, and the promise of a future where every patient鈥檚 voice helps shape care.