CancerCare® Publishes White Paper Highlighting Gaps in Education and Care for Patients with Tenosynovial Giant Cell Tumors (TGCT)
CancerCare, the leading national nonprofit organization providing free, professional support services to anyone affected by cancer, has released a white paper examining the unique concerns and experiences for people living with tenosynovial giant cell tumors (TGCT).
The white paper, “Improving Resources and Support for Patients with Tenosynovial Giant Cell Tumor,” is based on an advisory board discussion involving a medical oncologist and an orthopedic oncologist, both with expertise in TGCT, as well as representatives from four patient advocacy groups with an interest in this disease. The advisory board was convened to explore the patient journey from symptom onset to diagnosis and treatment, identify educational gaps and opportunities and discuss ways to strengthen support for those with TGCT.
TGCT is a rare, typically benign tumor that develops in the soft tissues in or around joints. It affects only between 11 and 50 people per million. TGCT is sometimes also referred to as pigmented villondular synovitis (PVNS) or giant cell tumor of the tendon sheath (GCT-TS). Through a discussion of patient experiences, advisors noted that the pain associated with the disease and its treatment can affect everyday activities, such as sitting, driving or cooking, as well as athletic pursuits or interests. In addition to these personal challenges, an overarching obstacle in the patient community is that despite the profound effects of TGCT on quality of life, severity of the disease is frequently underestimated because the tumor is only rarely malignant.
“Finding a community of individuals who relate to your experience is vital to feeling supported and finding resources. This can be exponentially difficult for those impacted by rare diagnoses,” shares Christine Verini, CancerCare’s Chief Operating Officer. “CancerCare’s mission has always been to provide help and hope, and we are proud to help elevate awareness of TGCT so that both patients and providers can connect with the resources they need.”
The white paper highlights several key opportunities to bolster support for patients with TGCT, including:
- Individualized, patient-centered treatment decision making
- Boosting education about TGCT with health care providers, especially in community practices
- Summits to expand awareness and disseminate research among both clinicians and patients
- Virtual tumor boards to expand access to multimodal treatment approaches
- Creation of a patient-focused website to share educational resources grounded in consistent terminology and clinical findings
These approaches, paired with cross-organizational advocacy efforts to engage the patient community, could greatly improve the experiences of people living with TGCT across the spectrum of care.
CancerCare researched and developed this white paper with the support of a grant from Daiichi Sankyo.
Founded in 1944, CancerCare is the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer. Our comprehensive services include case management, counseling and support groups over the phone, online and in-person, educational workshops, publications and financial and co-payment assistance. All CancerCare services are provided by master’s-prepared oncology social workers and world-leading cancer experts.
To learn more, visit www.cancercare.org or call 800-813-HOPE (4673).