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Living with cancer· Appointment prep

Appointment sheet: Perivascular epithelioid cell tumour (PEComa)

One page to bring and write on: your details, the questions for Perivascular epithelioid cell tumour (PEComa) 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

Perivascular epithelioid cell tumour (PEComa)

Prepared with OnCo (onco.cc/prep/pecoma/). 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

16 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 TSC1 or TSC2 inactivation, TFE3 fusion, HMB-45, Melan-A and smooth muscle actin co-expression, Size over 5 cm, mitoses, necrosis and infiltration), 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 malignant PEComa
  1. 6.For my situation (advanced malignant pecoma), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Sirolimus protein-bound particles, Everolimus, Temsirolimus, and what side effects should I expect?
  3. 8.How do the results of AMPECT apply to someone like me?
After mTOR inhibitor
  1. 9.For my situation (after mtor inhibitor), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Doxorubicin, Gemcitabine, and what side effects should I expect?
  3. 11.How do the results of Phase 2 Basket Trial of Nab-sirolimus in Patients With Malignant Solid Tumors With Pathogenic Alterations in TSC1/TSC2 Genes (PRECISION 1) apply to someone like me?
Any stage
  1. 12.Are there clinical trials I could join, for example of Sirolimus protein-bound particles, Phase 2 Basket Trial of Nab-sirolimus in Patients With Malignant Solid Tumors With Pathogenic Alterations in TSC1/TSC2 Genes (PRECISION 1), AMPECT?
  2. 13.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 14.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 15.I read that “Malignancy cannot always be predicted from histology”. How does that affect my plan?
  5. 16.I read that “Resistance to mTOR inhibition eventually develops”. How does that affect my plan?

Tests and results to bring

Biomarker results to ask for: TSC1 or TSC2 inactivation (mTOR inhibitor response), TFE3 fusion (excludes TSC pathway; poor mTOR response), HMB-45, Melan-A and smooth muscle actin co-expression, Size over 5 cm, mitoses, necrosis and infiltration (malignancy criteria).

Scans and tests linked to this cancer: Active 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