At the 2025 Cholangiocarcinoma (CCA) Summit, a session from Maureen Mork, MS, CGC, Mary Helen Larsen, MSN, RN, OCN, and Sarah Johnston, MS, RD, CDN, focused on multidisciplinary care, highlighting the collaborative roles of genetic counselors, nurses, and dietitians in closing clinical gaps and enhancing outcomes for patients with CCA.
Ms Mork opened the session with insights on hereditary cancer syndromes and the role of genetic counseling in identifying germline mutations linked to CCA. She began by explaining that approximately 5% to 10% of cancers have hereditary components, and studies suggest there are germline mutations in up to 20% of patients with CCA, although not all indicate a hereditary predisposition. She highlighted that expanded testing panels can inflate detection rates by including low-penetrance or incidental findings, with adjusted rates ranging from 3% to 10%.1
Among hereditary risk factors, Lynch syndrome remains the most established, with MLH1 mutations conferring up to a 3.7% risk in CCA.1 She also discussed BRCA mutations, noting that somatic testing can occasionally reveal germline BRCA1 and BRCA2 variants, although their role in CCA is unclear. Her talk highlighted that genetic counseling can identify hereditary cancer syndromes in individual patients, as well as guide cascade testing and preventive strategies for family members who may be at risk. She emphasized that germline testing informs patient care and extends its impact beyond the individual.
Ms Larsen followed by highlighting the pivotal role nurses play in patient education, symptom management, and advocacy.2 She began by noting that patients often struggle to understand complex treatment regimens, making nurses an essential link between patients and the care team. She then turned to symptom management, describing how nurses help mitigate common side effects such as nausea, fatigue, and diarrhea. Practical interventions, such as the use of antiemetic medications, were among the strategies she discussed. Finally, Ms Larsen underscored the nurse’s role in helping patients navigate clinical trial logistics and understand protocols, empowering the patient to stay engaged and adhere to treatment plans. Through the coordination of care and advocacy, nurses ensure patients feel supported throughout their care journey.
Next, Ms Johnston turned the discussion to nutrition and its critical impact on treatment tolerance and recovery in patients with CCA.3 She began by explaining that malnutrition, defined as meeting less than 75% of nutritional needs for more than 1 month, can worsen a treatment’s adverse events, and increase the likelihood of postoperative complications. Ms Johnston shared practical strategies to address this challenge. She emphasized ensuring adequate calories, protein, and hydration intake, particularly for patients undergoing systemic therapy or surgery. Foods rich in protein and antioxidants, such as lean meats, beans, and vegetables, were recommended to preserve lean muscle mass and support cell regeneration.
She also addressed common side effects like diarrhea, suggesting that plant-based foods can be modified for easier digestion by blending or pureeing. Hydration was another priority, and she advised using homemade oral rehydration solutions to prevent electrolyte imbalances during treatments such as cisplatin-based chemotherapy. For patients with exocrine pancreatic insufficiency, she highlighted pancreatic enzyme replacement therapy.
Finally, Ms Johnston cautioned against restrictive diets, advocating instead for balanced, diverse eating to support gut health and reduce anxiety around food. She stressed that early nutritional intervention improves treatment tolerance, reduces complications, and enhances quality of life.
The discussion turned to practical questions, such as how to determine protein and calorie needs for patients with liver cirrhosis, and strategies to address muscle loss. Ms Johnston provided clear guidance, recommending protein intake of 1 to 1.8 g/kg based on nutrition status. She also emphasized using visual aids to help patients understand portion sizes, making dietary advice more tangible and less overwhelming. Discussion in this session highlighted the importance of individualized care and flexibility to accommodate patient preferences while addressing nutritional gaps. Overall, the session highlighted how multidisciplinary care improves outcomes for patients with CCA. From genetic counseling to nursing support and nutrition management, each discipline plays a vital role in closing clinical gaps and enhancing quality of life in patients with CCA.
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