Congress Abstracts 2004

90

EDUCATING PATIENTS ON THE COMPLEXITIES OF FIBROLAMELLAR CANCER: NURSING IMPLICATIONS. Natasha Ramrup, RN, MSN, and Maria Pacis, RN, MS, ANP, Memorial Sloan Kettering Cancer Center, NY, NY.

Fibrolamellar cancer (FLC), a variant of hepatocellular cancer (HCC) manifests in adolescence and young adulthood. This rare disease has a clinical course that is distinct from typical HCC and accounts for less than 3% of hepatomas. Unresectable metastatic FLC has a median survival of 14 months. Patients diagnosed with FLC do not have underlying parenchymal liver disease or elevated tumor markers. The median age of diagnosis is approximately 24 years with no sex predilection and is predominantly found in Caucasians. Initial symptoms at presentation include vague abdominal pain, nausea, weight loss, fatigue, malaise, fever, and chills. An understanding of this complicated disease can lead to improved patient education about the treatment, recovery, and what to expect in the future.

At our NCI-designated comprehensive cancer center, a multidisciplinary team including oncologists specializing in managing patients diagnosed with FLC, pediatric oncologists, oncology nurses, social workers, and case managers are committed and dedicated to managing this population through a myriad of treatments to prolong survival and improve quality of life.

Surgical resection is the only curative treatment modality for this malignancy. Oncology nurses are in a pivotal position to teach patient/caregivers about this disease and treatment options that are available in the event that the disease recurs.

Clinical management and treatment of this patient population is complex and best accomplished by a multidisciplinary healthcare team. Ongoing psychosocial support is of utmost importance in helping patients navigate throughout the cancer experience. Nurses need to understand the complexities of this disease including its indolent course and the use of various treatment modalities such as surgery, chemotherapy, and hepatic embolization.

This presentation will (1) provide an overview of FLC, including associated symptoms and multimodality treatment, (2) describe the inpatient nurse’s role in educating patients about their disease and managing complications from treatment, (3) highlight the impact of FLC on quality of life, (4) discuss the multidisciplinary approach in assisting patients/families navigating the cancer experience, and (5) define the role of orthotopic liver transplantation. Since minimal research is available regarding this disease, more education and research is essential in understanding this patient population.