Appointment sheet
Chordoma
Prepared with OnCo (onco.cc/prep/chordoma/). Orientation, not medical advice; your team knows your case.
My details
Name
Date of appointment
Hospital and clinician
Who is coming with me
What I know, what is unclear, changes to discuss
Saved in this browserWhat I know so far
What is unclear to me
Changes since last time
My questions
13 on the sheetNewly diagnosed
- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 2.Which biomarkers have been tested on my tumour (for example Brachyurynuclear immunostaining, SMARCB1/INI1 loss, PDGFRB and EGFR expression, Germline TBXT duplication, Surgical margin status and location), and what were the results?
- 3.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
Resectable, any site
- 5.For my situation (resectable, any site), which of the standard options do you recommend and why?
Unresectable or medically inoperable
- 6.For my situation (unresectable or medically inoperable), which of the standard options do you recommend and why?
Advanced or metastatic
- 7.For my situation (advanced or metastatic), which of the standard options do you recommend and why?
- 8.Am I a candidate for Imatinib, Afatinib, Sorafenib or related drugs, and what side effects should I expect?
Any stage
- 9.Are there clinical trials I could join, for example of Carbon-ion therapy, Proton therapy, Afatinib?
- 10.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 11.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 12.I read that “No approved systemic therapy: trials of brachyury-directed vaccines, degraders and EGFR inhibitors are the response”. How does that affect my plan?
- 13.I read that “Recurrent skull-base disease after full-dose radiotherapy: re-irradiation with particles and salvage surgery are being studied”. How does that affect my plan?
The words I may hear
- Rare cancers: Rare cancers are those with fewer than about 6 new cases per 100,000 people per year.
Tests and results to bring
Biomarker results to ask for: Brachyury (TBXT) nuclear immunostaining (diagnostic), SMARCB1/INI1 loss (poorly differentiated subtype), PDGFRB and EGFR expression (drug selection in trials), Germline TBXT duplication (familial chordoma), Surgical margin status and location (skull base vs sacrum).
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Resectable, any site: En bloc resection with negative margins by a spine or skull-base team, followed by high-dose proton or carbon-ion radiotherapy; intralesional surgery is associated with early recurrence. (Proton therapy, Carbon-ion therapy, IMRT / IGRT (modern external beam))
- Unresectable or medically inoperable: Definitive particle therapy (proton or carbon-ion) to 70 Gy-equivalent or higher; stereotactic photon radiosurgery where particles are unavailable. (Proton therapy, Carbon-ion therapy, SBRT / SABR (stereotactic radiotherapy))
- Advanced or metastatic: Clinical trial preferred. Imatinib (PDGFRB-positive), afatinib or other EGFR inhibitors, or sorafenib give mainly disease stabilisation; tazemetostat was used for INI1-negative poorly differentiated chordoma until Ipsen withdrew it from all markets in March 2026. (Imatinib, Afatinib, Sorafenib, Tazemetostat, Small-molecule kinase inhibitors)
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.
Answers and next steps
Saved in this browserWhat I was told
Agreed next steps, dates and who to call