OnCo

Sign in to keep your watchlist

Your watched pages live in this browser. Sign in with an email link and OnCo keeps the same list on every device you use. Only your email address and your watchlist are stored.

Living with cancer· Appointment prep

Appointment sheet: Alveolar soft part sarcoma

One page to bring and write on: your details, the questions for Alveolar soft part 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

Alveolar soft part sarcoma

Prepared with OnCo (onco.cc/prep/alveolar-soft-part-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

14 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 ASPSCR1-TFE3 fusion, PAS-positive, diastase-resistant crystals, Brain imaging surveillance for metastases), 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, first line
  1. 6.For my situation (advanced, first line), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Atezolizumab, Sunitinib, Pazopanib or related drugs, and what side effects should I expect?
  3. 8.How do the results of Phase III Trial of Anlotinib, Catequentinib in Advanced Alveolar Soft Part Sarcoma, Leiomyosarcoma, Synovial Sarcoma (APROMISS) apply to someone like me?
Oligometastatic
  1. 9.For my situation (oligometastatic), which of the standard options do you recommend and why?
Any stage
  1. 10.Are there clinical trials I could join, for example of Atezolizumab, Anlotinib, Clinical Trials of Benmelstobart Injection Combined With Anlotinib Hydrochloride Capsules in the Treatment of Advanced or Unresectable Alveolar Soft Part Sarcoma, Phase III Trial of Anlotinib, Catequentinib in Advanced Alveolar Soft Part Sarcoma, Leiomyosarcoma, Synovial Sarcoma (APROMISS)?
  2. 11.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 12.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 13.I read that “Why a low-mutation fusion sarcoma responds to immunotherapy is not understood”. How does that affect my plan?
  5. 14.I read that “Brain metastases are common and hard to treat”. How does that affect my plan?

Tests and results to bring

Biomarker results to ask for: ASPSCR1-TFE3 fusion (FISH or RNA sequencing; TFE3 immunohistochemistry), PAS-positive, diastase-resistant crystals, Brain imaging surveillance for metastases.

Scans and tests linked to this cancer: MRI, MRD / molecular residual disease testing.

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