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Living with cancer· Appointment prep

Appointment sheet: Rhabdomyosarcoma

One page to bring and write on: your details, the questions for Rhabdomyosarcoma 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

Rhabdomyosarcoma

Prepared with OnCo (onco.cc/prep/rhabdomyosarcoma/). 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 PAX3/PAX7-FOXO1 fusion status, Site, IRS group and TNM stage, Nodal status, MYOD1 L122R), 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?
Low risk (embryonal, favourable site, complete resection)
  1. 5.For my situation (low risk (embryonal, favourable site, complete resection)), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Vincristine, Dactinomycin (actinomycin D), Cyclophosphamide, and what side effects should I expect?
Intermediate risk
  1. 7.For my situation (intermediate risk), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Vincristine, Dactinomycin (actinomycin D), Cyclophosphamide or related drugs, and what side effects should I expect?
High risk (metastatic)
  1. 9.For my situation (high risk (metastatic)), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Vincristine, Irinotecan (and liposomal irinotecan), Ifosfamide or related drugs, and what side effects should I expect?
Relapsed
  1. 11.For my situation (relapsed), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Vinorelbine, Cyclophosphamide, Irinotecan (and liposomal irinotecan) or related drugs, and what side effects should I expect?
Any stage
  1. 13.Are there clinical trials I could join, for example of Temsirolimus, Vinorelbine, CAR-T cell therapy, B7-H3?
  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 “Metastatic alveolar RMS: survival <30% for 30 years”. How does that affect my plan?
  5. 17.I read that “PAX3-FOXO1 is an undrugged fusion transcription factor”. How does that affect my plan?

The words I may hear

  • Li-Fraumeni syndrome (germline TP53): Li-Fraumeni syndrome is an inherited fault in the TP53 gene giving a lifetime cancer risk near 100% in women and ~75% in men, with sarcomas, breast cancer, brain tumours, adrenal cancer and leukaemias often in childhood.
  • Gene fusion: A gene fusion is two genes broken and joined together, creating a hybrid protein that can drive cancer.

Tests and results to bring

Biomarker results to ask for: PAX3/PAX7-FOXO1 fusion status (FISH/RT-PCR), Site (favourable: orbit, non-parameningeal head and neck, GU non-bladder/prostate), IRS group and TNM stage, Nodal status (PET-CT, biopsy for extremity/paratesticular), MYOD1 L122R (poor), Age (>10 years, <1 year unfavourable).

Scans and tests linked to this cancer: PET/CT, Methylation classifier for sarcomas.

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