I Am… Living Between Stable and Uncertain
“Stable” was supposed to be good news.
After months of chemotherapy and immunotherapy, the scans showed that the tumors hadn’t grown. For many cancers, that’s a moment of relief. For bile duct cancer, it can be the moment when the hardest decisions begin.
In a recent Smart Patients conversation thread, a member shared a moment familiar to many bile duct cancer patients: his tumors were stable, but his options were narrowing. His oncologist stopped the chemotherapy and continued immunotherapy alone. Referrals followed—to a radiation oncologist and to a surgeon, even though surgery still wasn’t an option yet. Then the surgeon drew a line: If you start radiation, I won’t operate—even if the tumors shrink.
Stability had brought him to a crossroads. He turned to the community with the question that captured it all.
The Realities of This Rare Cancer
For patients with cholangiocarcinoma (bile duct cancer), stability exists alongside stark math and difficult choices. Approximately 8,000 Americans are diagnosed with it yearly, most commonly after 70. It's often diagnosed late, after symptoms have finally appeared. By then the treatment options are severely limited.1 Surgery offers the only real chance of cure—-but only 20% to 30% of patients are eligible for surgery because most tumors are inoperable by the time they're discovered.2 For patients who can't have surgery, the path forward becomes a series of calculated risks.
When Other Patients Fill the Gaps
The bile duct cancer community on Smart Patients is small, but members still find each other. It's especially important when people are being asked to weigh life-altering options without feeling fully informed, fully included, or fully prepared. They turn to other patients to seek answers, to compare notes, and to share how their thinking may have changed with time and more experience.
"Radiation makes tissues more fragile, and liver tissue is difficult to operate on even without added fragility," one member explained. Another shared a family experience: "My brother-in-law has this cancer. He just had radiation on the liver. For him I don't think it was helpful but surgery was off the table given the size of his mass."
Capturing what many feared, one member offered perspective by saying, "The statistics are daunting; but remember, statistics only tell what happens to a large group of people, not to an 'average' patient."
These conversations don't replace medical advice, but they do reveal what patients need in order to understand their options and feel prepared to make decisions.
From the Patients' Perspective
What this member was experiencing wasn’t unusual. The confusion, the competing recommendations, the sense that decisions were being made around him rather than with him—these themes surface again and again in conversations among people living with rare cancers.
“It is very confusing navigating through everything.”
The stories patients share in our bile duct cancer community point to something larger: The way decisions are communicated often matters as much as the decisions themselves.
In a recent Smart Patients survey of 59 patients and caregivers with biliary tract and related cancers, nearly 6 out of 10 reported being unhappy with how treatment decisions were made. Only 2 out of 10 felt genuinely involved.
For patients already facing uncertainty, gaps in basic understanding compound the burden. Four out of ten did not know their HER2 status—information that can shape treatment options—and only 14% felt their doctor had explained it clearly.
Patients with rare cancers don’t expect easy answers. But they do need to be heard, prepared, and connected—to clinicians who partner with them, and to peers who understand the hidden implications behind words like "stable" and answers like "yes" or "no."
If you or someone you care for has been diagnosed with bile duct cancer, you can connect with others navigating similar decisions at Smart Patients. Here, lived experience becomes shared knowledge—and patients help one another ask better questions, together.