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Living with cancer· Appointment prep

Appointment sheet: Malignant peripheral nerve sheath tumour (MPNST)

One page to bring and write on: your details, the questions for Malignant peripheral nerve sheath tumour (MPNST) 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

Malignant peripheral nerve sheath tumour (MPNST)

Prepared with OnCo (onco.cc/prep/malignant-peripheral-nerve-sheath-tumour/). 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 Loss of H3K27 trimethylation on immunohistochemistry, NF1, CDKN2A, SUZ12 or EED alterations, TP53 loss, FDG-PET uptake in neurofibromas, Germline NF1 status), 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?
  2. 6.Am I a candidate for Doxorubicin, Ifosfamide, and what side effects should I expect?
Advanced
  1. 7.For my situation (advanced), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Doxorubicin, Ifosfamide, Etoposide, and what side effects should I expect?
  3. 9.How do the results of EORTC 62012 apply to someone like me?
Neurofibromatosis type 1 surveillance
  1. 10.For my situation (neurofibromatosis type 1 surveillance), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for Selumetinib, Mirdametinib, and what side effects should I expect?
Any stage
  1. 12.Are there clinical trials I could join, for example of Selumetinib, Mirdametinib, MEK1/2, RAS / RAF / MEK / ERK (MAPK)?
  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 “Metastasis is common even after complete local treatment”. How does that affect my plan?
  5. 16.I read that “Chemotherapy works less well in the NF1-associated tumours that make up half of cases”. How does that affect my plan?

Tests and results to bring

Biomarker results to ask for: Loss of H3K27 trimethylation on immunohistochemistry (PRC2 loss), NF1, CDKN2A, SUZ12 or EED alterations, TP53 loss (high grade), FDG-PET uptake in neurofibromas (transformation), Germline NF1 status.

Scans and tests linked to this cancer: MRI, PET/CT.

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