Sydney Towle, a New York-based content creator who built a following of more than 1.1 million people on TikTok by documenting her battle with a rare bile duct cancer, died Wednesday at age 26. Her brother, Austin Towle, had announced earlier in the week that she had been moved to hospice care and was surrounded by friends and family.
Towle was diagnosed with cholangiocarcinoma at just 23 years old, according to New York Daily News, which reported on her death and the tribute her family shared afterward. She had amassed 211,000 followers on Instagram in addition to her TikTok audience, using both platforms to chronicle a disease that, as she herself put it, did not fit any of the usual demographic factors associated with it. Her family, in a statement following her death, said they will always love her and are proud of how hard she fought.
Before her diagnosis upended her life, Towle graduated from Dartmouth College in 2022 with a degree in government and environmental studies and went on to work as a social media manager for Epic Games, according to Us Weekly. That career trajectory shifted entirely after her 2023 diagnosis in Los Angeles, when doctors found an 11-centimeter intrahepatic tumor and she underwent major surgery that removed 80% of her liver along with her gallbladder and nearby lymph nodes, per Cycle for Survival. She later relocated to New York City to receive specialized care at Memorial Sloan Kettering Cancer Center.
A Diagnosis That Defied the Statistics
Cholangiocarcinoma, or bile duct cancer, primarily affects individuals over age 50, per the Mayo Clinic. American Cancer Society data shows the disease is overwhelmingly one of older demographics, with an average diagnosis age of 70 for the intrahepatic form Towle had, and nearly two-thirds of all cases occurring in adults 65 or older. Towle was diagnosed at 23, decades younger than the typical patient, and she repeatedly described her condition as extremely rare on her platforms.
The illness is itself uncommon: roughly 8,000 people are diagnosed with bile duct cancer in the U.S. each year, according to the American Cancer Society, though public health experts note the true figure is likely higher due to diagnostic difficulty and misclassification. For patients diagnosed with distant or metastatic intrahepatic cholangiocarcinoma like Towle, the 5-year relative survival rate is just 3%, with median survival typically running 12 to 14 months. In May, Towle announced that her cancer had spread to her pelvis and the lining of her abdomen, according to a report cited by People.
Fighting Through Harassment and a Final Clinical Trial
As her following grew, Towle also became a target of internet groups that falsely accused her of faking her illness, harassment that reportedly escalated to critics contacting her sponsors and her hospital directly. Her Memorial Sloan Kettering oncologist, Dr. Ghassan Abou-Alfa, ultimately spoke publicly to verify her Stage 4 diagnosis and explain that young cancer patients can still maintain an active physical appearance despite terminal illness, according to MDLinx. Towle reportedly dismissed her oncologist's encouragement to pursue end-of-life care rather than continue treatment, choosing instead to keep fighting.
That fight included chemotherapy and clinical-trial treatment throughout her illness. In her final weeks, Towle enrolled in a clinical trial involving tumor-infiltrating lymphocyte, or TIL, therapy, undergoing surgery to harvest her tumors for the experimental treatment, according to FOX 4 Dallas. She reportedly spent her final month in the hospital undergoing the trial's procedures.
Advocacy Beyond the Diagnosis
Towle used her platform for more than documenting her own treatment. She served as a key speaker and fundraiser for Cycle for Survival, the rare cancer fundraising program run through Memorial Sloan Kettering in partnership with Equinox, and she spoke at the 2025 Cholangiocarcinoma Foundation annual conference to push for increased research funding. She also walked the runway at Miami Swim Week in June for Post Swim's “The Chemo Club” line and took part in New York Fashion Week, efforts aimed at challenging public assumptions about how cancer patients look and live, as noted by Daily Voice.
Beyond cancer advocacy, Towle also set up a GoFundMe in 2025 to support her mother after she was laid off amid federal government workforce cuts tied to the Department of Government Efficiency, according to background compiled on Wikipedia. She organized the campaign while continuing her own treatment.
In a tribute shared following her death, Towle was remembered as an endless ray of sunshine, daughter, sister, and friend to many. Her death closes out a public battle that made her, at 26, one of the youngest and most visible faces of a disease still largely unfamiliar to the general public.
