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In 2023, Sydney Towle, then 23, developed a bump on her abdomen that she could feel. When she exercised, she experienced a stinging in her stomach. Worried that she developed a hernia, Towle visited an urgent care clinic.
"The doctor thought I had a hernia, but he was like, 'I'll send you in for an ultrasound, just in case,'" Towle, now 25, of New York City, tells TODAY.com. "I got an ultrasound, and it showed a solid mass."
Follow-up tests revealed Towle had bile duct cancer, also called cholangiocarcinoma, a rare cancer that forms on the network of tubes that link the liver, gallbladder and small intestine, according to the National Cancer Institute. According to the American Cancer Society, bile duct cancers are most often diagnosed in people in their 70s. Towle felt stunned by the news.
"I've never heard of bile duct cancer," she says. "I only knew the major forms of cancer like breast cancer, lymphoma."
Unexpected bump and pain
While she noticed the bump for a few months, Towle didn't visit the doctor immediately because she was "young and healthy," she recalls. But when she started experiencing pain, she realized she needed to seek medical care.
"When I was going on walks, I started feeling a burning sensation in my stomach," she says.
After the ultrasound showed a mass, Towle underwent an MRI.
"(It) showed that it was cancerous," she says. "I had to go to the hospital to get a biopsy, which determines the type of cancer that I had."
The biopsy revealed she had bile duct cancer, and doctors considered how to proceed with her care. At the time, it had not spread to other locations in her body.
"There's not one set treatment plan because it's such a rare cancer," she says.
Still, doctors believed that chemotherapy to reduce the size of the tumor paired with surgery that would effectively treat her cancer. For five months, Towle did chemotherapy and immunotherapy. At times, she felt overwhelmed with its side effects.
"The first few days after I got chemo, I was pretty much in bed the whole time because it makes you extremely tired," she says. "Then I would try to go about my life as normally as possible."
She experienced extreme bloating and swelling, as well as exhaustion, but nothing more serious.
"I feel like I got pretty lucky with the symptoms because I am pretty young and healthy," she says. "I wasn't getting extremely sick."
The chemotherapy worked, too.
"I responded very well, my oncologist said," Towle recalls. "They reduced it to good margins to the point where I could get surgery."
Towle underwent surgery in January of this year to remove the remaining mass.
"It went really well. I came out of it, and the surgeon said that she got all of it pretty much," Towle says. "There was some cancer like left on the margin where they resected my liver. But overall the tumors were gone."
That meant she didn't need to restart chemotherapy, though she still had some cancer lingering in her body.
"My oncologist was like, 'You're not cancer free. You still have cancer on the margins of where they took out the tumor. ... You should be fine for now and we'll just keep an eye on it,'" Towle explains.
For several months, she underwent regular scans to make sure the remaining cancer didn't grow. Everything was clear until an MRI in in August detected a small lesion. Doctors initially thought it could've been scar tissue from her previous surgery and scheduled another MRI for a month later to see if the spot had changed at all.
Doctors told Towle that if the follow-up MRI showed the spot had grown, then it was likely cancer, but if it stayed the same, it was just scar tissue.
"It had doubled in that time so that proved it was cancerous," Towle says.
Bile duct cancer
Bile duct cancer is rare and comes with few symptoms, which means many people are diagnosed at later stages.
"Sadly, we do often find these in stages where they're not surgically manageable," Dr. Antony Ruggeri, a medical oncologist at Aurora St. Luke's Medical Center, who did not treat Towle, previously told TODAY.com.
Facing cancer again
Towle cannot receive chemotherapy again because her white blood cell count is too low from her previous treatment and the cancer growing back. She currently has cancer on her liver, and it has spread to one abdominal lymph node. She was told her options were surgery or joining a clinical trial.
"I don't think I've processed it," she says. "I've kind of disassociated from it."
After recently moving to New York City for work, Towle is seeing a new medical team, who will conduct their own scans and take a biopsy of her cancer growth to understand it and come up with a new treatment plan.
While Towle appreciates that her new doctors are being thorough, it also feels "very frustrating" because all the retesting feels like a step back, she shared on her TikTok account.
"I'm trying to feel positive about it," she said. "But it just kind of feels like I'm restarting everything."
Towle has been telling her story on social media, and connecting with others has helped her navigate having such a rare cancer.
"They reach such a wide audience that I will get messages from people my age or with parents (who have it)," she says. "It's been a really great way to connect with people even if it's not my specific cancer."
When she was first diagnosed, she felt touched by all the messages of support she received, and that has motivated her to continue being "transparent" about her health.
"I'm bringing light to this, and so that has encouraged me to continuing posting and sharing, especially when I am not doing well or when I receive good news," she says. "It always seems to help people feel less alone like they're not the only ones that are going through something that's very challenging."
Towle hopes her experience teaches people the importance of seeking medical care when something seems wrong.
"If you have some sort of warning signs, do not ignore them because I did," she says.