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Patient guide · intimal sarcoma

Questions to ask your oncologist

The questions we wish we had asked in the first weeks — about the diagnosis, surgery, chemotherapy, molecular testing, tissue, trials and follow-up. Print it and take it with you.

Last reviewed 2026-09-24 · 5 min read · sources at the end of the page

In short

  • Confirm the diagnosis with a sarcoma pathologist and MDM2 testing.
  • Ask whether complete removal is possible and how experienced the surgeon is with this exact operation.
  • Ask for the molecular report — it decides which targeted drugs and trials are possible.
  • Ask about tissue: preservation, freezing, donation to research.
  • Ask for the follow-up schedule and copies of everything, in writing.

How to use this list

Print it (it is formatted for printing), cross out what does not apply, and take it to your appointment. Ask the doctor if you may record the conversation or bring someone to take notes — most say yes. You do not need to ask everything at once; the sections follow the order in which decisions are usually made.

About the diagnosis

  • Has the diagnosis of intimal sarcoma been confirmed by a sarcoma pathologist at a reference center?
  • Was the tumour tested for MDM2 amplification (immunohistochemistry, FISH or sequencing)? What was the result?
  • Was a comprehensive sequencing panel run? Which genes were amplified (MDM2, CDK4, PDGFRA, others), and can I have a copy of the report?
  • What is the grade, and where exactly is the tumour (pulmonary trunk, right/left pulmonary artery, heart, aorta)?
  • Is there any doubt about the diagnosis? What else could it be?

About the extent of the disease

  • Which scans have I had, and do I need others — CT of chest and abdomen, FDG-PET/CT, cardiac MRI?
  • Is there any sign of spread (metastases)? Where?
  • Is the tumour confined to the vessel, or does it involve the vessel wall, the lung, the heart valve or other structures?
  • How is the heart coping — is there pulmonary hypertension or right-heart strain?

About surgery

  • Is complete removal (R0) realistically possible? What is the chance of clear margins?2
  • Which operation exactly — resection and reconstruction, pulmonary endarterectomy, pneumonectomy, open-heart surgery?
  • How many of these operations has the team done? What were the outcomes?
  • What are the risks of the operation itself (mortality, lung function, heart function), and what does recovery look like?
  • If the tumour cannot be fully removed, is a partial removal still worthwhile — for symptoms or to enable other treatment?
  • Should I be operated on here, or referred to a center with a cardiac tumour surgery programme?

About chemotherapy, radiotherapy and drugs

  • Do you recommend chemotherapy before surgery, after surgery, or not at all — and why?13
  • Which regimen (anthracycline-based? with ifosfamide?), how many cycles, what side effects, and what is the expected benefit?
  • Is radiotherapy part of the plan? Before or after surgery?
  • Based on my molecular profile, is any targeted drug (MDM2 inhibitor, CDK4/6 inhibitor, PDGFR inhibitor) an option — in a trial or off-label through a molecular tumour board?
  • Was PD-L1 or tumour mutational burden measured? Is immunotherapy an option or a trial question for me?4
  • Which clinical trials could I be eligible for, here or elsewhere? Who will check?

About tissue and research

  • Is my tumour tissue preserved (paraffin blocks)? Can part of it be frozen for research if surgery is still ahead?
  • Can I direct my tissue to research (for example a sarcoma biobank or a patient-initiated tissue donation programme)?
  • Can my case be documented for a registry or research initiative, with my consent?
  • May I have copies of all reports (pathology, molecular, operation, radiology) and my imaging on disc or as a download?

About follow-up and daily life

  • What is the follow-up schedule — which scans, how often, for how long? Can I have it in writing?
  • Which symptoms should make me call you immediately?
  • Who is my contact person, and how do I reach the team between appointments?
  • What can I do myself — exercise, anticoagulation, vaccinations, work, travel?
  • Is psycho-oncological support available for me and my family?

About a second opinion

  • Would you support a review of my case at a sarcoma reference center? Which one would you suggest?
  • Can my pathology slides and imaging be sent there, and how long will it take?
  • If the recommendations differ, how will we decide?

What to bring to a sarcoma center

  • Pathology and molecular reports (PDF)
  • Operation report and discharge letters
  • All imaging (CT, MRI, PET) with the written radiology reports — on disc or via a transfer link
  • A one-page timeline: symptoms, dates, treatments, doses
  • Current medications, other conditions, allergies
  • Your questions — this list
This page is information, not medical advice. It is written by patients and checked against the published literature, but it cannot know your situation. Please discuss everything here with your own care team, ideally at a sarcoma reference center.
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Sources

  1. Review. Intimal sarcoma, review and future perspectives. Current Opinion in Oncology 2026. doi:10.1097/CCO.0000000000001246.
  2. Single-center surgical series. Surgical management of primary pulmonary artery sarcoma (20 consecutive resections, 2000–2018). Seminars in Thoracic and Cardiovascular Surgery 2021 (online). doi:10.1053/j.semtcvs.2021.10.013.
  3. Frezza AM, Assi T, Lo Vullo S, et al.. Systemic treatments in MDM2 positive intimal sarcoma: a multicentre experience with anthracycline, gemcitabine, and pazopanib within the World Sarcoma Network. Cancer 2020;126:98–104. doi:10.1002/cncr.32508.
  4. Multi-omics study. Multi-omics analysis revealed potential use of immunotherapy and CDK4/6 inhibitors in intimal sarcoma (31 intimal sarcomas, 35 angiosarcomas). Frontiers in Immunology 2025. doi:10.3389/fimmu.2025.1668537.
  5. Koelsche C, et al.. Intimal sarcomas and undifferentiated cardiac sarcomas carry mutually exclusive MDM2, MDM4, and CDK6 amplifications and share a common DNA methylation signature. Modern Pathology 2021. doi:10.1038/s41379-021-00874-y.