Abstract A048: Surviving undiagnosed rare lymphoma: A patient perspective on diagnostic delays, treatment barriers, and advocacy in stage IV SPTCL with HLH

Abstract

Subcutaneous panniculitis-like T-cell lymphoma (SPTCL) is an exceptionally rare subtype of non-Hodgkin lymphoma, frequently complicated by hemophagocytic lymphohistiocytosis (HLH), a life-threatening hyperinflammatory syndrome. Due to its rarity and nonspecific presentation, SPTCL poses significant diagnostic challenges, often resulting in delayed diagnosis and advanced-stage disease at presentation. This patient-informed perspective describes the experience of a South Asian immigrant woman diagnosed with stage IV SPTCL complicated by HLH in a Canadian healthcare setting. The patient initially presented with persistent high-grade fevers, syncope, and mucocutaneous symptoms, leading to multiple emergency department visits over several months without a definitive diagnosis. Following prolonged hospitalization and multiple diagnostic evaluations, a skin biopsy ultimately confirmed stage IV SPTCL. Treatment included combination chemotherapy followed by autologous stem cell transplantation during the COVID-19 pandemic. The clinical course was complicated by cytomegalovirus retinitis resulting in permanent vision loss and treatment-induced premature menopause. The patient subsequently achieved remission. This case highlights key gaps in rare lymphoma care: (1) diagnostic delays associated with nonspecific presentations of rare hematologic malignancies; (2) systemic and cultural barriers faced by immigrant patients navigating complex healthcare systems; and (3) limited availability of culturally relevant survivorship and peer support resources for individuals with ultra-rare diagnoses. Since remission, the patient has engaged in advocacy to address cancer stigma and improve patient engagement within underserved communities, including the development of culturally tailored support initiatives. These findings underscore the need for increased clinical awareness of SPTCL, earlier diagnostic pathways, and integration of patient perspectives to improve equitable, patient-centered care in rare lymphoma populations. This abstract was developed with the assistance of generative artificial intelligence to improve clarity; all content has been reviewed and verified by the author.