Influencer Sydney Towle has died of a rare bile duct cancer at the age of 26. Her family announced this week that she passed away just days after entering hospice care for cholangiocarcinoma.
A few months before her death, Towle spoke to her more than one million followers about her failing treatment. Three years earlier, at 23, she was a vibrant model and content creator before her diagnosis. Her family described her as an "endless ray of sunshine" who was the picture of health.
Towle candidly documented her experience, including opening the Chemo Club x Post Swim show at Miami Swim Week in May.
"I still have a feeling that everything is going to be okay... but I also am really, really scared that it's not," Towle said through tears. "I want more Aprils, and I want more happiness and friendship and love and life. I'm terrified that's not going to happen, but we'll just get through tomorrow, and then we'll take it as it comes."
Doctors say Towle's story reflects a troubling trend in the US. Cholangiocarcinoma was once considered a rare disease of older adults, but it is now diagnosed in a growing number of people under 50.
Rising case numbers
National Cancer Institute data show diagnoses rose by 44 percent between 2001 and 2017. Among adults under 45, the incidence increased by 81 percent over the same period. Between 8,000 and 10,000 Americans are diagnosed each year, and only about one in 10 survives for five years. Even for those diagnosed early, long-term survival is poor.
The cancer does not appear strongly linked to lifestyle factors like heavy alcohol use, smoking or obesity. Instead, many cases strike without warning. The disease affects the thin tubes that carry digestive fluid from the liver to the small intestine.
"Many who come to us after their diagnosis do not fit the bill of a typical cancer patient," Helen Morement, chief executive of the UK charity AMMF, said. The charity supports people with cholangiocarcinoma. "These are often healthy people who don't smoke, don't drink and rarely eat red meat."
Daniella Thackray, a 25-year-old HR professional from the UK, died of the disease in 2024. In a pre-written LinkedIn post published after her death, she noted she had no classic risk factors for liver disease.
"Firstly, I just want to say that not all cancers are caused by lifestyle choices," Thackray wrote. "In some cases it's genetics or, unfortunately, it just happens. In my case, despite me being very healthy and active, a cancer started in my bile ducts that was not caused by anything within my control, and my life was never the same again."
Ultra-processed foods
Researchers suggest the rise in cases could be linked to ultra-processed foods made with industrial ingredients like preservatives, emulsifiers and artificial flavorings. These products, such as packaged breads, breakfast cereals, sodas and ready meals, make up around 60 percent of the average American diet. However, proving a direct link remains difficult.
Professor John Bridgewater, a gastrointestinal oncologist at University College London Hospitals NHS Foundation Trust, said the cause remains unclear.
"All we know is that cholangiocarcinoma is on the rise, but there is very little awareness of it, not just among the public, but within the healthcare profession too," Bridgewater said.
Early warning signs
The earliest warning signs are vague. The cancer grows deep within the body close to the liver, pancreas and major blood vessels. In its early stages, tumors can grow unnoticed for months.
Unmistakable signs like jaundice, abdominal pain or unexplained weight loss often develop only after the cancer has spread or wrapped around vital blood vessels. This makes surgery, the only potential cure, impossible.
Symptoms such as indigestion are common when a growing tumor blocks the bile duct and disrupts digestive fluids. Pale stools and dark urine are key clues that bile is not flowing normally.
"We often hear from patients who were first told they probably had IBS [irritable bowel syndrome] and were sent home with some tablets," Morement said. "The number of patients with the classic cholangiocarcinoma symptoms who are essentially flicked away by doctors is shocking."
Diagnostic challenges
There is no routine screening test for bile duct cancer, unlike breast, bowel or cervical cancer. Doctors rely on liver function blood tests, imaging scans and biopsies.
Daily Mail journalist and royal correspondent Katie Nicholl was diagnosed with the disease in 2023 at the age of 47. She initially assumed her fatigue, indigestion and heart palpitations were tied to perimenopause or stress.
Blood tests and scans showed nothing unusual. A cardiologist eventually ordered an abdominal ultrasound, which revealed a tumor the size of her palm blocking a bile duct near her liver.
"Everyone, myself included, first thought my symptoms were down to stress," Nicholl wrote. "It was only because I pushed for further scans that my cancer was detected early enough for me to have a very good prognosis."
She added: "I've always been healthy. I eat well, exercise regularly, don't smoke and I'm not a big drinker. But when I started getting heart palpitations, I had this gut feeling that something wasn't right."
Reducing risk
The American Cancer Society recommends vaccination against hepatitis B, a viral infection that can cause chronic liver inflammation and cirrhosis. Both conditions increase the risk of bile duct cancer.
Limiting alcohol can also prevent cirrhosis. The society advises women to have no more than one alcoholic drink a day, and men no more than two.
For patients with the disease, precision medicine offers new options. Doctors analyze a tumor sample through molecular profiling to find genetic changes that match targeted drugs or immunotherapy.
"All my patients get molecular profiling, but I worry about those living elsewhere in the country, in more rural areas for example, who are missing out," Bridgewater said.
Targeted treatments
Ilona Smith, 44, from London, was diagnosed in 2020 after experiencing severe back pain and pain around her liver. She underwent three months of chemotherapy, surgery to remove the tumor, and another course of chemotherapy.
Smith was declared cancer-free, but a scan in May 2022 showed the disease had returned. A second round of chemotherapy and two experimental treatments failed.
In May 2023, molecular profiling showed her tumor had a genetic alteration that a new drug could target. She enrolled in a clinical trial because the drug was not yet available in the UK.
Smith began taking two tablets a day, which caused few side effects and halted the cancer's growth.
"I'm still taking the tablets today and they still appear to be working," Smith said. "I got lucky because I got molecular profiling, but many people do not."
