Questions to ask: Sarcoma

Diagnosis

• What exact type of sarcoma do I have?
• What is the grade and stage of my sarcoma?
• Has an expert sarcoma pathologist reviewed my biopsy?
• Was my tumor tested for gene changes or fusions? What did they show?
• If I have GIST, what KIT or PDGFRA change does my tumor have?
• Has the sarcoma spread to my lungs or other places?
• Is the goal of treatment to cure the cancer or to control it?
• Is this a sarcoma center? How many people with my type of sarcoma do you treat each year?
• Should I get a second opinion at another sarcoma center?
• Should I or my family have genetic testing?

Before

• What treatment do you suggest, and in what order?
• Can I keep my arm or leg? What will surgery involve?
• Will I need radiation before or after surgery? What are the trade-offs?
• Will chemotherapy help for my type of sarcoma?
• If I have GIST, should I take a targeted pill after surgery, and for how long?
• How will treatment affect my ability to walk, work, or play sports?
• Should I store eggs or sperm before treatment?
• Are there clinical trials I could join?
• Will I need to stay in the hospital for treatment?
• Who should I call with problems at night or on weekends?
• What costs should I expect, and who can help with insurance and travel?

During

• How will we know if the treatment is working?
• Which side effects should I call about right away?
• How much should I drink during ifosfamide treatment?
• When can I start physical therapy?
• Are there foods, supplements, or other medicines I should avoid with my targeted pill?
• What happens if the cancer grows during treatment?
• Can I see a palliative care team to help with pain and symptoms?
• Can I see a social worker, counselor, or dietitian?
• How can my caregiver help, and what should they watch for?

After

• How often will I need checkups and scans, and for how long?
• What signs could mean the sarcoma has come back?
• What long-term effects should I watch for, like heart or fertility problems?
• Will I need ongoing physical therapy or a prosthesis?
• Who will be my main doctor after treatment ends?
• Where can I find sarcoma or young adult support groups?
• What are my options if the sarcoma comes back?

Last updated: 2026-10-27. Medically reviewed by Veli Bakalov, MD, medical oncologist (October 2026). General education from Step by Step, the patient portal of HemeOncBuddy.