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Living with cancer· Appointment prep

Appointment sheet: Undifferentiated pleomorphic sarcoma (UPS)

One page to bring and write on: your details, the questions for Undifferentiated pleomorphic sarcoma (UPS) 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

Undifferentiated pleomorphic sarcoma (UPS)

Prepared with OnCo (onco.cc/prep/undifferentiated-pleomorphic-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

17 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 FNCLCC grade, size and depth, Exclusion of specific differentiation by immunohistochemistry and molecular testing, TP53, RB1, CDKN2A and ATRX alterations, Tertiary lymphoid structures and B-cell-rich immune class), 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, limb or trunk
  1. 5.For my situation (localised, limb or trunk), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Doxorubicin, Ifosfamide, and what side effects should I expect?
  3. 7.How do the results of ISG-STS 1001 apply to someone like me?
Advanced, first line
  1. 8.For my situation (advanced, first line), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Doxorubicin, Ifosfamide, and what side effects should I expect?
  3. 10.How do the results of EORTC 62012 apply to someone like me?
Later lines
  1. 11.For my situation (later lines), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Gemcitabine, Docetaxel, Trabectedin or related drugs, and what side effects should I expect?
Any stage
  1. 13.Are there clinical trials I could join, for example of Pembrolizumab, Immune checkpoint inhibitors, ISG-STS 1001?
  2. 14.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 15.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 16.I read that “No molecular driver to target; the diagnosis is defined by what the tumour is not”. How does that affect my plan?
  5. 17.I read that “A third of high-grade limb tumours still metastasise to the lungs”. How does that affect my plan?

The words I may hear

  • FNCLCC grade (soft-tissue sarcoma): The FNCLCC grade is a 1-to-3 score for soft-tissue sarcomas based on how abnormal, how fast-dividing, and how much dead tissue the tumour shows; grade drives whether chemotherapy is considered.

Tests and results to bring

Biomarker results to ask for: FNCLCC grade, size and depth (risk), Exclusion of specific differentiation by immunohistochemistry and molecular testing, TP53, RB1, CDKN2A and ATRX alterations, Tertiary lymphoid structures and B-cell-rich immune class (immunotherapy response).

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