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Living with cancer· Appointment prep

Appointment sheet: Soft tissue sarcoma of the extremity (localised and advanced)

One page to bring and write on: your details, the questions for Soft tissue sarcoma of the extremity (localised and advanced) 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

Soft tissue sarcoma of the extremity (localised and advanced)

Prepared with OnCo (onco.cc/prep/extremity-soft-tissue-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

18 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 over 5 cm and depth, Histological subtype by expert pathology and molecular testing, Margin status after resection, Lung CT staging and surveillance), 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, resectable
  1. 5.For my situation (localised, resectable), which of the standard options do you recommend and why?
High-risk localised (large, deep, high grade)
  1. 6.For my situation (high-risk localised (large, deep, high grade)), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Doxorubicin, Ifosfamide, and what side effects should I expect?
  3. 8.How do the results of ISG-STS 1001 apply to someone like me?
Advanced, first line
  1. 9.For my situation (advanced, first line), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Doxorubicin, Ifosfamide, Trabectedin, and what side effects should I expect?
  3. 11.How do the results of EORTC 62012 and LMS-04 apply to someone like me?
Later lines and oligometastatic
  1. 12.For my situation (later lines and oligometastatic), which of the standard options do you recommend and why?
  2. 13.Am I a candidate for Gemcitabine, Docetaxel, Pazopanib or related drugs, and what side effects should I expect?
Any stage
  1. 14.Are there clinical trials I could join, for example of LMS-04, ISG-STS 1001, Trabectedin, Pembrolizumab?
  2. 15.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 16.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 17.I read that “A third to a half of high-risk limb sarcomas still metastasise to the lungs”. How does that affect my plan?
  5. 18.I read that “Chemotherapy prolongs control but rarely survival in advanced disease”. How does that affect my plan?

The words I may hear

  • Histotype-tailored therapy: Histotype-tailored therapy means choosing treatment by the specific sarcoma subtype (there are more than 70) rather than treating all sarcomas alike.
  • 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 over 5 cm and depth (Sarculator risk), Histological subtype by expert pathology and molecular testing, Margin status after resection, Lung CT staging and surveillance.

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