After an Epithelioid Sarcoma Diagnosis: Questions to Ask Your Doctor

A diagnosis of epithelioid sarcoma can be overwhelming. This fact sheet will discuss:

• How to prepare for your appointments
• Some terminology about epithelioid sarcoma
• What questions will help you learn more about your diagnosis

The Importance of Communicating With Your Health Care Team

Your team of doctors, nurses and social workers are there to help. Here are some tips for your appointments.

• Bring a list of questions. This will help you remember important things to ask. Write down or record the responses so that you do not forget them.

• Consider bringing a loved one with you. A friend or a family member can help ask questions and provide emotional support.

• Ask questions about costs. Knowing how much your treatment and medications might cost can help you plan ahead and focus more attention on getting better.

If your doctors and nurses do not know every answer, they may be able to guide you to those who do.

Understanding More About Epithelioid Sarcoma

The following are some basics that may help facilitate discussions with your health care team:

A sarcoma is a cancerous tumor that forms in tissues of the body including fat, muscle, blood vessels, bones, skin and other places. Epithelioid sarcoma is a cancer that most often starts as hard lumps in the fingers, hands, wrists, forearms or feet with the potential to spread.

Epithelioid sarcoma is often described according to location. The distal type is located in the fingers, hands, wrists, forearms or feet. The proximal type occurs in the torso, near or in the genital area or limbs closer to the trunk of the body.

Questions That You May Want to Ask Your Health Care Team

The following questions should help you learn key information about your diagnosis and situation.

“Where is my epithelioid sarcoma?”

Your doctor can tell you where the cancer has been found and whether it has spread.

“What stage is my epithelioid sarcoma?”

Epithelioid sarcoma stages range from Stage I to Stage IV, determined by whether it is smaller and localized or has spread to other parts of the body.

“What are my treatment options?”

There are many kinds of treatments for epithelioid sarcoma. These can include surgery, radiation therapy, targeted therapy and chemotherapy.

“Is there a clinical trial available to me?”

Clinical trials test new approaches based on known and effective treatments for cancer. Doctors often urge people to take part in clinical trials if they are available.

“Is surgery an option for me?”

If surgery is an option, your health care team can help you get ready. They should be able to explain what the surgery does, what recovery is like and what the effects may be.

“How can I cope with my emotions?”

In addition to loved ones, you can find help including places of worship, support groups and counseling services. Ask to speak to a social worker or patient navigator for additional support resources.

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