Symptoms of bile duct cancer as TikTok star Sydney Towle dies of 'exceptionally rare' disease aged 26

Sydney Towle penned an emotional final letter just three months before her tragic death and opened up about the 'guilt' she felt while being visited by loved ones in hospital.

The influencer, who was diagnosed with an aggressive bile duct cancer aged just 23, had inspired millions by candidly documenting her heart-wrenching journey for her followers. However, there are some key symptoms of the rare illness.

Towle had authored deeply personal essays on a Substack page in which she opened up about her experience and spoke honestly about how she was feeling. In her latest one in May, she penned a message about her chemotherapy treatment and being visited in hospital.

But it was announced on Thursday (6 August) that now 26-year-old Towle had tragically passed away as her family revealed the devastating news.

Her brother, Austin Towle, posted a photograph to TikTok of Sydney on a mountain top with the sun shining behind her and a smile beaming on her face. It simply read: "Rest in Peace Sydney Elizabeth Towle. November 15th 1999-August 5th 2026. An endless ray of sunshine. A daughter, sister, and friend to so many. I will always love you so much."

The TikTok star Sydney had been bravely battling the rare form of cancer for three years and had previously defied doctor advice to move to hospice. However days before she died, her family confirmed she had entered into end-of-life care.

Symptoms of cholangiocarcinoma

Towle was only 23 when she was diagnosed with cholangiocarcinoma - a rare form of bile duct cancer. It is typically found in older adults over 65, but the NHS says anyone can get bile duct cancer and it's not clear what causes it.

About 2,200 people in England are diagnosed with bile duct cancer every year, but it’s still classed as a rare cancer and doesn’t tend to run in families. For Towle, she explained in one video how she was 'already at stage four' when it was diagnosed.

There are two types of the cancer, Intrahepatic, which is a bile duct cancer that starts in bile ducts inside the liver, or extrahepatic, when it starts in bile ducts outside the liver.

According to Liver Cancer UK, early bile duct cancer may not cause any symptom, or may be vague. It is common that those with the cancer may first feel sick of lose their apetite.

If the cancer blocks bile ducts, patients may develop jaundice leading to their skin and eyes looking yellow. Other symptoms that are common include itching, dark wee, pale coloured poo and flu-like symptoms such as muscle aching, fever and tiredness.

Other symptoms include losing weight without meaning to and abdominal pain that spreads to the back.

However all of these symptoms are commonly caused by other conditions, so it is important for anyone concerned to see their GP. More details are available from Liver Cancer UK.

"My strength isn't what it used to be"

Towle published regular personal essays to her Substack page in a series she titled 'Stoop Thoughts.' Her final one, published on May 11, was titled 'In sickness and in health: why accepting help is a symbol of love.'

In it, Towle confessed feelings of guilt upon realising that her loved ones wanted to visit and support her through her treatment, and discussed her reluctance to accept the help being offered.

She wrote: “I'm embarrassed to admit, though I shouldn’t be, that my strength isn’t what it used to be. And like someone who is losing their vision yet refuses glasses, I don’t want to accept that reality quite yet.

"I am back in the hospital this week. As with chemo, I typically don’t ask anyone to come. Aside from my mom who would come anyway because, well, she’s my mom (<3). But the first day I was admitted, my friends started texting me asking when they could come visit.

"And that little seed of guilt that was planted far before my recognition of its existence begins to bloom. Why guilt? Why do I feel guilty for my friends willingly wanting to come support me in a time of need?"

She continued: "This guilt only exists as a bi-product of something askew in my brain. Likely a result of trauma, as are most things. It is not real. Accepting help, asking for help, is normal. It is how our world has always worked — leaning on one another, forming communities, certainly not operating in isolation.

The content creator also expressed her appreciation for having her friends in her hospital room with her and by her bedside, reflecting that despite her feelings, time with people you love is 'all that matters'.

She continued: “Because this is what it’s all about, really. All that matters in life, as life keeps reaffirming for me, is the people you love. The people you get to share this life with. The people you get to laugh with until your belly hurts. The ones whose shoulders are there for when the tears start falling. Through every ebb and flow."

Who is Sydney Towle?

Sydney, who was based in New York, was an influencer who started her wildly successful TikTok account after learning her shocking diagnosis and began sharing her journey with the world.

She was just 23 when she learned she had contracted the disease, making her cancer an extremely rare occurrence. But she took the terrible news and turned it into something positive by growing her supportive network of followers.

Her cancer eventually spread to her stomach and lungs and a doctor had advised her to enter hospice, but instead she sought a second opinion and specialists to help her deal with her worsening condition.

Through her determination, she made an appearance at Miami Swim Week in late May, modelling a specially designed swimsuit that was tailored for her surgical scars and a body that had been fighting cancer for years.

Speaking on the major milestone she labelled as one of the proudest moments of her life, Sydney said in a TikTok video: “People always ask why I’m so positive? Why would I not envision the best-case scenario?

“Miracles happen every day. Nobody knows for sure what’s going to happen.”

Sydney's last TikTok post was made on July 29 when she shared at her delight over one of her favourite bands, Royal Otis, dedicating a song to her during a gig.