Follow the instructions from your clinical team. If you believe you may be experiencing an emergency, contact your local emergency service.
1. Write down the exact words used
Ask your team to write down the information that applies to you, including:
- The exact sarcoma type or suspected subtype.
- Where it began and whether any other areas are being evaluated.
- The grade or stage, if your team uses those terms for your diagnosis.
- Which tests are complete and which results are still pending.
- The name and contact details of the clinician coordinating your care.
NCI notes that diagnosis may involve medical history, examination, imaging, laboratory testing, and often a biopsy. The process varies by situation.
2. Keep one record of your care
Create a folder—paper or digital—for:
- Pathology and imaging reports.
- Visit summaries and the names of the clinicians you met.
- Medicines, allergies, and relevant health history.
- Upcoming appointments and contact numbers.
- Your questions, symptoms, and treatment information.
NCI recommends keeping copies of plans and results and recording visits, tests, treatments, medicines, side effects, and symptoms.
3. Ask about sarcoma experience
Sarcoma includes many uncommon subtypes. Ask whether your pathology has been reviewed by a pathologist experienced in sarcoma and whether a multidisciplinary sarcoma team is involved. If you are considering a second opinion, ask how to obtain the records and images another team will need.
4. Prepare your next appointment
Put your most important questions first. Bring another person if that would help, and ask before recording a conversation. Our appointment page turns this into a printable checklist.
5. Choose the support you need today
Practical help, emotional support, caregiver support, and financial guidance are all legitimate parts of cancer care. A hospital social worker, nurse navigator, counselor, or patient organization may help you find local options.
Find patient and caregiver support