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Appointment sheet: Sinonasal undifferentiated carcinoma (SNUC) and SWI/SNF-deficient sinonasal carcinoma

One page to bring and write on: your details, the questions for Sinonasal undifferentiated carcinoma (SNUC) and SWI/SNF-deficient sinonasal carcinoma 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

Sinonasal undifferentiated carcinoma (SNUC) and SWI/SNF-deficient sinonasal carcinoma

Prepared with OnCo (onco.cc/prep/sinonasal-undifferentiated-carcinoma/). 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 IDH2 R172 mutation, SMARCB1and SMARCA4 immunohistochemistry, NUT immunohistochemistryand EBV, Response to induction chemotherapy on imaging, Neck node 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?
Diagnosis
  1. 5.For my situation (diagnosis), which of the standard options do you recommend and why?
Locally advanced disease, first step
  1. 6.For my situation (locally advanced disease, first step), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Cisplatin, Etoposide, Platinum + etoposide (EP / CE), and what side effects should I expect?
Responders to induction
  1. 8.For my situation (responders to induction), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Cisplatin, and what side effects should I expect?
Non-responders to induction
  1. 10.For my situation (non-responders to induction), which of the standard options do you recommend and why?
Metastatic or recurrent disease
  1. 11.For my situation (metastatic or recurrent disease), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Platinum + etoposide (EP / CE), Pembrolizumab, Nivolumab or related drugs, and what side effects should I expect?
Any stage
  1. 13.Are there clinical trials I could join, for example of Enasidenib, Proton therapy, Pembrolizumab?
  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 “No randomised trial exists and the induction-response strategy rests on one centre's series”. How does that affect my plan?
  5. 17.I read that “Enasidenib's activity in IDH2-mutant sinonasal carcinoma is unproven”. How does that affect my plan?

The words I may hear

Tests and results to bring

Diagnosis: Biopsy with immunohistochemistry (cytokeratins, NUT, INI1, SMARCA4, neuroendocrine markers, EBER) and IDH2 testing; MRI and CT of the sinuses, skull base and neck; PET-CT.

Biomarker results to ask for: IDH2 R172 mutation (diagnosis; enasidenib eligibility), SMARCB1 (INI1) and SMARCA4 immunohistochemistry (SWI/SNF-deficient carcinomas), NUT immunohistochemistry (exclude NUT carcinoma) and EBV (exclude nasopharyngeal-type carcinoma), Response to induction chemotherapy on imaging (decides surgery versus chemoradiotherapy), Neck node status, PD-L1 (investigational).

Scans and tests linked to this cancer: CT (computed tomography), Histopathology & immunohistochemistry, 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