Additional Advances in Biliary Tract Cancer Research and Advocacy With Melinda Bachini
Expert Perspectives · Keira Smith · 2026-02-19
Biliary tract cancers (BTCs), including cholangiocarcinoma, remain among the most complex and aggressive malignancies encountered in oncology practice. Melinda Bachini, the Chief Patient Officer at the Cholangiocarcinoma Foundation and a 16‑year survivor of stage IV intrahepatic cholangiocarcinoma, recently served as a member of i3 Health’s Multidisciplinary Task Force activity, Challenges and Innovations in Biliary Tract Cancer: A Multidisciplinary Task Force Perspective. In this follow-up interview in honor of World Cholangiocarcinoma Day, she shared further insights into her experiences as a patient and advocate, the importance of clinical trials, and the power of advocacy in the cholangiocarcinoma community.
A Survivor’s Perspective
Ms. Bachini’s journey began with nonspecific symptoms familiar to many patients with BTC: right shoulder pain, fatigue, and gastrointestinal discomfort. Initially suspected to have gallstones, she was soon found to have a liver mass that required surgical resection. Despite early intervention, her disease recurred within months, leaving her with few systemic treatment options at a time when only a single standard‑of‑care regimen existed.
Insurance obstacles and clinical trial ineligibility further complicated her path—until she ultimately enrolled in a National Cancer Institute trial utilizing adoptive cell therapy with tumor‑infiltrating lymphocytes. “I was the first one to have a response, and that trial kind of went down in history,” she said.
Advocacy and the Cholangiocarcinoma Foundation
Motivated by her experience, she began volunteering with the Cholangiocarcinoma Foundation, eventually joining full‑time and now leading a nine‑member advocacy team. The organization—celebrating its 20‑year anniversary—has expanded to nearly 40 employees and remains dedicated to providing patients and caregivers with education, biomarker testing guidance, clinical trial navigation, and second‑opinion support.
Ms. Bachini finds deep purpose in her role, stating, "I get the privilege of working with patients and caregivers every day, helping them to navigate this diagnosis, connecting them with resources and tools, helping them find second opinions, making sure they’re getting the right biomarker testing, and searching for clinical trials—but most importantly, just making those connections so they know they’re not alone going through this journey.”
Raising Awareness: "Light It Green"
February marks Cholangiocarcinoma Awareness Month, with February 19 designated as World Cholangiocarcinoma Day. Each year, the Foundation’s “Light It Green” initiative invites supporters to illuminate homes, bridges, and public landmarks in green to promote visibility and awareness. Additional events include regional symposia—such as an upcoming program in Birmingham, Alabama—bringing together patients, caregivers, and multidisciplinary care teams for a full day of education and updates on emerging therapies. Ms. Bachini emphasized the necessity of these efforts, explaining, "We just want people to understand what cholangiocarcinoma is, because when I was diagnosed, I had never heard of it before."
The Importance of Clinical Trials
Ms. Bachini highlights clinical trial participation as a central theme for improving survival in BTC. With most therapeutic advancements emerging from trial research, she encourages providers to introduce trial discussions “early and often,” including at the first‑line stage. She also dispels common patient concerns regarding placebos, noting that modern oncology studies rarely withhold standard‑of‑care therapy. Because BTC patients are often willing to travel for appropriate options, clinicians should share opportunities beyond their own institutions. “Clinical trials are imperative to this disease,” she underscores. “Our chance for longer-term survival and for a cure is in clinical trials."
Recent Advances and Targeted Therapies
New advances continue to reshape the treatment landscape. Standard‑of‑care chemotherapy has improved with the addition of immunotherapy, contributing to extended overall survival. The field has also seen multiple FDA approvals of targeted therapies for actionable genomic alterations frequently identified in biliary tract tumors, including FGFR2 fusions, IDH1 mutations, and HER2 alterations. Ms. Bachini observed that "biliary tract cancers have a high volume of targetable mutations, so there are lots of opportunities there," adding that while there have been "lots of advancements made, which is exciting, I will also say that we still have a lot of room for growth."
Insights from the Multidisciplinary Task Force
For clinicians viewing the Task Force recording, Ms. Bachini encourages attention to three key areas: the challenges of early diagnosis, the critical role of biomarker testing, and the importance of understanding the patient journey. She underscores that the multidisciplinary perspective is essential for modern care.
A Message of Hope and Community
As Cholangiocarcinoma Awareness Month continues, Ms. Bachini emphasizes the power of community, connection, and advocacy. Her message to clinicians and care teams is clear: continued education, early biomarker analysis, proactive trial discussions, and awareness efforts all play meaningful roles in improving outcomes for patients facing cholangiocarcinoma. She remains a firm believer in the Foundation's mission, concluding that "our tagline is ‘Strength in Community, Hope in Research,’ and that is such the truth. There's so much strength in getting connected to a community who understands what you're going through. This Cholangiocarcinoma Awareness Month, we want to make sure that we highlight the need for more funding, more research, and more tools to help patients navigate this disease, but more importantly, just to let these patients and caregivers know that they’re not alone.”
Key Takeaways
Prioritize Early Biomarker Testing: Given the high volume of targetable mutations in BTC (eg, FGFR2, IDH1, HER2), early genomic profiling is essential to identify personalized treatment pathways and clinical trial eligibility.
Introduce Clinical Trials Early and Often: Trials should be presented as a proactive treatment option, including in the first-line setting, rather than a "last resort" for patients.
Address Placebo Concerns Proactively: Clinicians can improve trial enrollment by reassuring patients that placebos are rarely used alone and that participants typically receive at least the current standard of care.
Leverage Patient Advocacy Resources: Connecting patients with organizations like the Cholangiocarcinoma Foundation can provide vital support for second opinions, trial navigation, and emotional well-being.
Adopt a Multidisciplinary Approach: The complexity of BTC diagnosis and management requires close collaboration between surgeons, oncologists, and research teams to optimize the patient journey.
About Ms. Bachini
Melinda Bachini is the Chief Patient Officer of the Cholangiocarcinoma Foundation, a nonprofit organization providing hope for improved treatments and outcomes for those affected by cholangiocarcinoma. She is a 16-year survivor of cholangiocarcinoma. Ms. Bachini is passionate about patient advocacy and using her experiences to provide insight into clinical trials. She also serves as a patient advocate for the ECOG-ACRIN GI Committee, the ECOG-ACRIN Cancer Research Advocacy Committee, the NCI Council of Research Advocates, and the NCCN Hepatobiliary Guidelines Panel.