Meet Your ES Care Team
It’s important to seek a team of diverse experts and specialists to support you throughout your ES journey. This team will be essential for guiding you through diagnosis, treatment and recovery.
As a patient, you play an important role in making care decisions. Don’t be afraid to ask questions of your care providers. You don’t have to face this alone. Talk to your doctor about building the right support team for you.
Your ES Care Team may include both medical and non-medical providers and may comprise any or all of the following individuals:
Primary Care Physician (PCP) or General Practitioner (GP): This is the main doctor who cares for your general health. You may have talked with your PCP about your first symptoms of ES. Your PCP may refer you for a biopsy by a surgeon or surgical oncologist who will send the biopsy to a pathologist who will confirm a diagnosis.
Surgical Oncologist: May perform the biopsy to confirm diagnosis or perform the operation to remove the tumor (or as much of the tumor as possible) following diagnosis.
Pathologist: Studies the biopsy in a lab to rule out other potential diseases and determine the ES diagnosis. You probably won’t have direct interaction with the pathologist, who will communicate your results with the specialist who requested the biopsy.
Nurse Practitioner/Physician Assistant: Works closely with your doctor and surgeon to provide medical care.
Oncology Nurse: Provides care by administering treatment, monitoring your physical condition and checking for side effects from treatment.
Nurse Navigator: Typically coordinates and manages your care plan through your treatment center, since you may be seen by several different types of doctors. A nurse navigator is typically present throughout all aspects of your care and available to help you understand information related to your diagnosis and treatment plan.
Therapist: Depending on your treatment clinic and treatment, you may be referred to a psychiatrist or occupational therapist to support you through the emotional aspects of your cancer diagnosis.
Seek a Sarcoma Specialist
Certain healthcare professionals specialize in soft tissue sarcomas, which means they may also be knowledgeable about diagnosing and treating ES. If you or a loved one are diagnosed with ES, consider locating a doctor and/or treatment center that specializes in managing sarcoma so that you may receive care from experienced providers.
Several organizations provide information on sarcoma specialists across the United States:
Sarcoma Alliance for Research Through Collaboration (SARC): Maintains a list of SARC Centers across the United States.
Sarcoma Foundation of America: Maintains a list of Sarcoma Treatment Centers to assist with locating a sarcoma specialist.
National Cancer Institute (NCI): Delivers cutting-edge cancer treatments to patients across the United States through NCI-Designated Cancer Centers. Search to find a sarcoma center near you.
Social Worker/Case Manager: Helps you obtain access to psychosocial services. May also help evaluate and manage some of the other factors in your life, such as transportation to and from treatment, childcare while undergoing treatment, applying for financial assistance, and connecting you with community resources.
Financial Navigator: Helps you set up a payment plan through the hospital and may be able to help you seek and apply for financial assistance within the hospital system.
Patient Advocate: Helps you navigate many aspects of your journey with epithelioid sarcoma, including disease education, support services and connections with people who have similar experiences to yours. May also support clinical research and policy decisions related to researching new treatments.
Before your next appointment, check out these resources to arm yourself with information for a productive conversation with your Care Team.