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Living with cancer· Appointment prep

Appointment sheet: Epithelioid sarcoma

One page to bring and write on: your details, the questions for Epithelioid sarcoma plus your own, the words you may hear, what to bring, the treatments the standard of care names, and room for the answers and agreed next steps. What you type stays in this browser. Print it or save it as a PDF. New to all this? Start with the first 60 days. Orientation, not medical advice.

Tick the questions to print

All of this cancer's questions start ticked. Untick what does not apply; ticks are kept in this browser. .

Your own questions

Shared with the prep pack, so questions you add there appear here too.

Print or save as PDF

Use (or Ctrl+P, Cmd+P on a Mac). To keep a copy, choose Save as PDF as the destination in the print dialog. Only the sheet prints; the controls stay on screen. Your typed notes print where you typed them; empty fields print as ruled lines to write on.

Appointment sheet

Epithelioid sarcoma

Prepared with OnCo (onco.cc/prep/epithelioid-sarcoma/). 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 browser
What I know so far
What is unclear to me
Changes since last time

My questions

12 on the sheet
Newly diagnosed
  1. 1.What is my exact diagnosis, stage, and grade, and which tests established them?
  2. 2.Which biomarkers have been tested on my tumour (for example SMARCB1/INI1 loss by immunohistochemistry, CD34 and cytokeratin co-expression, Regional lymph node status, Tumour size and depth), and what were the results?
  3. 3.Which subtype is my cancer, and does that change the recommended treatment?
  4. 4.Is germline (inherited) genetic testing recommended for me or my family?
Localised
  1. 5.For my situation (localised), which of the standard options do you recommend and why?
Advanced or metastatic
  1. 6.For my situation (advanced or metastatic), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Tazemetostat, Doxorubicin, Ifosfamide, and what side effects should I expect?
Any stage
  1. 8.Are there clinical trials I could join, for example of Tazemetostat with doxorubicin as front-line therapy for advanced epithelioid sarcoma (EZH-301 run-in), Tazemetostat, EZH2, Epigenetic drugs (HDAC, DNMT, EZH2, IDH, menin, BET)?
  2. 9.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 10.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 11.I read that “Response rate to tazemetostat monotherapy is modest: combinations with doxorubicin (EZH-301) and immunotherapy are being tested”. How does that affect my plan?
  5. 12.I read that “Confirmatory evidence for the accelerated approval is still pending”. How does that affect my plan?

The words I may hear

  • Accelerated approval: FDA approval based on early evidence (like tumour shrinkage) on condition that a confirmatory trial follows.
  • 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: SMARCB1/INI1 loss by immunohistochemistry (diagnostic), CD34 and cytokeratin co-expression, Regional lymph node status, Tumour size and depth (proximal vs distal).

Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.

The treatments I may be offered

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 browser
What I was told
Agreed next steps, dates and who to call