Rare but Treatable: Sarcoma Care in the Community Setting

Sarcoma is a rare cancer that is estimated to affect just over 17,000 people in the US annually. It is currently estimated that 1% of all adult cancers and 15-20% of childhood cancers are sarcomas, arising either in bone or within soft/connective tissues. 

Sarcoma is a deadly disease, but it doesn’t have to be. Currently, the overall survival rate from any form of sarcoma is 65%. Almost 60% of sarcomas are found when they are still a localized disease, for which the 5-year survival rate is up to 81%. When detected in more advanced stages, the 5-year survival rate decreases to 18% for those with locally advanced disease and to 16% for those who have metastatic disease. There are few treatments for patients with sarcoma, but they are available, and clinical trials and more research into new treatments are underway. Due to the rarity of these cancers and with over 100 different subtypes of sarcoma, most community oncologists will rarely, if ever, see or treat a patient with any form of sarcoma during the tenure of their career. This makes it all the more important for them to have trusted resources available if and when they are needed.

Promoting Awareness

For many patients, sarcoma can be a particularly difficult diagnosis because of its presentation with non-specific or confusing symptoms. Soft tissue sarcomas, for example, may initially present as a painless lump or swelling, which can easily be mistaken for a more benign condition. Bone sarcomas might cause bone aches, pain, or fractures which could be confused with other musculoskeletal problems. These factors highlight the need for heightened awareness among both patients and health care providers alike. Organizations such as the Sarcoma Foundation of America (SFA) are vital to address these unmet needs. The SFA aims to bridge any gaps in knowledge for clinicians and empowers patients to take an active role in their care.

To facilitate the process of diagnosis, treatment, and patient care, SFA has partnered with the Association of Cancer Care Centers (ACCC) to develop a multitude of resources about sarcoma for community clinicians, patients, and caregivers. This collaboration aims to ensure that health care professionals in the community setting have access to the latest research, treatment protocols, and clinical trial data. The ACCC/SFA partnership also aims to equip patients with information that can improve their quality of life and expand treatment options tailored to individual sarcoma types. For example, resources like webinars and educational seminars help clinicians stay up to date on emerging therapies and updates from key oncology meetings by sarcoma specialists. Meanwhile, clinical trial matching services connect patients to potentially life-saving trials that may otherwise go undiscovered.

Clinical trials are key to improving outcomes for patients with sarcomas. SFA has created a clinical trial matching service to provide easy-to-obtain information about potential trial eligibility for patients with sarcoma. SFA provides contact information for this service as well as the capacity to connect patients to the trial sites.

Treating the Whole Patient

Beyond medical treatment, the psychological impact of a sarcoma diagnosis should not be overlooked. Patients and caregivers often face an emotional and mental health burden that requires attention and support. Community oncology settings, where most sarcoma patients are treated, can provide an opportunity for holistic care that integrates psychosocial support, mental health resources, survivorship programs, and other supportive care options.

Though sarcoma presents significant challenges due to its rarity and complexity, there is hope on the horizon. Advances in research, better access to clinical trials, and increased awareness among clinicians are key factors in improving care for patients with sarcoma. The cumulative efforts of organizations like SFA and ACCC are helping to close the knowledge gap and ensure that both patients and oncology providers have the tools they need to make informed decisions. As awareness grows and research advances, progress is made towards the goal of better clinical outcomes. With ongoing dedication and collaboration between advocacy groups and community oncology care teams, the future looks brighter for patients with this rare but treatable cancer.

Nicole A. Colwell, MD, is a senior editor/medical writer for the Association of Cancer Centers (ACCC). Brandi Felser, MBA, is the Executive Director of the Sarcoma Foundation of America (SFA).