In the months before her death from a rare bile duct cancer, influencer Sydney Towle shared with striking honesty the fragile balance between hope and terror as her treatments stopped working.
Speaking through tears to her audience of more than one million followers, she said: ‘I still have a feeling that everything is going to be okay… but I also am really, really scared that it’s not.
‘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.’
Towle’s family confirmed this week that the 26-year-old died only days after beginning hospice care for cholangiocarcinoma, a rare cancer that forms in the bile ducts — the narrow tubes that move digestive fluid from the liver to the small intestine.
Three years before her death, Towle was a thriving model and content creator, remembered by her family as an ‘endless ray of sunshine’ and seemingly the image of good health before a devastating diagnosis upended her life.
While her case may sound extraordinarily uncommon, physicians say it mirrors a concerning pattern now appearing across the United States.
Cholangiocarcinoma, long viewed as a rare cancer mostly affecting older adults, is increasingly being found in patients under 50. Doctors also note that, unlike several other cancers involving the liver and digestive tract, it does not seem to be closely tied to familiar lifestyle risks such as heavy drinking, smoking or obesity.
Sydney Towle, who was diagnosed with cholangiocarcinoma at 23, gained a loyal following by openly sharing each stage of her cancer treatment
That means many cases appear to strike without warning, making the disease exceptionally difficult to detect before it has spread.
Part of the danger, experts say, is that the earliest warning signs are often so vague they can easily be dismissed.
Cholangiocarcinoma grows deep within the body, close to the liver, pancreas and major blood vessels. In its early stages it often causes few, if any, symptoms, allowing tumors to grow unnoticed for months.
By the time unmistakable signs such as jaundice, abdominal pain or unexplained weight loss develop, the cancer has often spread or wrapped itself around vital blood vessels, making surgery – the only potential cure – impossible.
Of the 8,000 to 10,000 Americans diagnosed each year, only about one in 10 is alive five years later. Even among those diagnosed at an early stage, long-term survival remains poor.
The urgency is growing. National Cancer Institute data show diagnoses rose by 44 percent between 2001 and 2017. Among adults under 45, incidence increased by 81 percent over the same period.
So why is this once-uncommon cancer increasingly affecting younger adults, and what symptoms should people never ignore? The Daily Mail spoke to leading specialists to find out.
Doctors agree that improving the bleak survival statistics depends on one thing above all else: diagnosing the disease before it has a chance to spread.
That was the lesson learned by Daily Mail journalist Katie Nicholl, who was diagnosed with bile duct cancer in 2023 at the age of 47 after developing what seemed like minor health problems.
At first, the royal correspondent assumed her fatigue, indigestion and heart palpitations were linked to perimenopause. She has since said it was only because of a series of fortunate events that doctors eventually found the cancer.
After blood tests and scans failed to reveal anything unusual, a cardiologist agreed to order one final test – an abdominal ultrasound. It revealed a tumor the size of her palm blocking a bile duct near her liver.
Despite being reassured that cancer was unlikely because of her age, further investigations confirmed the diagnosis: cholangiocarcinoma.
Even as her condition worsened, Towle refused to let fear dictate her outlook. She is pictured above at left on the beach and at right opening the Chemo Club x Post Swim show at Miami Swim Week in May
Royal commentator Katie Nicholl found out she had cholangiocarcinoma (CCA), a rare and aggressive type of liver cancer, also known as bile duct cancer
‘Everyone, myself included, first thought my symptoms were down to stress,’ she 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.
‘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.’
Katie’s experience is echoed by Daniella Thackray, a 25-year-old HR professional from the UK who was diagnosed with bile duct cancer despite living a healthy lifestyle and having none of the classic risk factors associated with liver disease, such as heavy drinking or obesity.
In a pre-written LinkedIn post published after her death in 2024, she wrote: ‘Firstly, I just want to say that not all cancers are caused by lifestyle choices. 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.’
Specialists say stories like theirs are becoming increasingly familiar – younger patients developing bile duct cancer without any obvious explanation.
‘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, which supports people with cholangiocarcinoma, said.
‘These are often healthy people who don’t smoke, don’t drink and rarely eat red meat.’
The signs of bile duct cancer can be subtle, such as abdominal pain and dark-colored urine
Towle died three years after her diagnosis. Her family had confirmed she had entered hospice just says before her passing
Researchers have also raised the possibility that the rise in cases could be linked to ultra-processed foods (UPFs) – products made using industrial ingredients such as preservatives, emulsifiers and artificial flavorings.
Common examples include packaged breads, breakfast cereals, sodas and ready meals. Research suggests UPFs now make up around 60 percent of the average American diet.
But proving any direct link has been difficult.
Professor John Bridgewater, a gastrointestinal oncologist at University College London Hospitals NHS Foundation Trust, said: ‘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.’
That lack of awareness is one reason the disease is so often diagnosed late.
Early symptoms – including indigestion, abdominal pain, unexplained weight loss and jaundice – can easily be mistaken for far more common conditions. Indigestion is particularly common, thought to occur when a growing tumor blocks the bile duct and disrupts the normal flow of digestive fluids.
‘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.’
One clue that can help distinguish bile duct cancer from more common digestive problems is the development of pale stools and dark urine – both signs that bile is no longer flowing normally.
Unlike breast, bowel and cervical cancer, there is no routine screening test for cholangiocarcinoma. Doctors instead rely on liver function blood tests, imaging scans and, in many cases, biopsies to make the diagnosis.
Surgery remains the only potentially curative treatment, but by the time many patients are diagnosed, tumors have already grown around major blood vessels or spread beyond the bile ducts, making them impossible to remove safely.
While many cases occur without an obvious cause, experts say there are still steps people can take to reduce their risk.
The American Cancer Society recommends vaccination against hepatitis B, a viral infection that can cause chronic liver inflammation and cirrhosis – both of which increase the risk of bile duct cancer.
Limiting alcohol intake can also help prevent cirrhosis. The society advises women to have no more than one alcoholic drink a day and men no more than two.
The above chart shows the rise in cases and deaths from cholangiocarcinoma in the US
Treatment options remain limited, particularly once the disease has spread. But advances in precision medicine are beginning to offer new hope for some patients.
To identify those treatments, doctors first need to analyze a sample of the tumor in a process known as molecular profiling. The testing looks for genetic changes that can be matched to targeted drugs or, in some cases, 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,’ said Professor Bridgewater.
One patient who benefited was Ilona Smith, 44, from London. She was diagnosed with cholangiocarcinoma in 2020 after developing severe back pain and pain around her liver.
After three months of chemotherapy, she underwent surgery to remove the tumor, followed by another course of chemotherapy. She was declared cancer-free, but a routine scan in May 2022 revealed the disease had returned.
A second round of chemotherapy failed, as did two experimental treatments. At that point, she was told there were no further options.
Then, in May 2023, molecular profiling revealed her tumor carried a genetic alteration that could be targeted with a new drug. Although it was not yet available in the UK, she was able to enroll in a clinical trial.
She began taking two tablets a day. The treatment caused few side effects and halted the cancer’s growth.
‘I’m still taking the tablets today and they still appear to be working,’ she said.
‘I got lucky because I got molecular profiling, but many people do not.’
