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Living with cancer· Appointment prep

Appointment sheet: Esthesioneuroblastoma (olfactory neuroblastoma)

One page to bring and write on: your details, the questions for Esthesioneuroblastoma (olfactory neuroblastoma) 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

Esthesioneuroblastoma (olfactory neuroblastoma)

Prepared with OnCo (onco.cc/prep/esthesioneuroblastoma/). 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 Hyams grade, Kadish or modified Kadish stage, Synaptophysin, chromogranin and S100 sustentacular cell pattern, Somatostatin receptor expression and DOTATATE PET uptake, IDH2 mutation), 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 and staging
  1. 5.For my situation (diagnosis and staging), which of the standard options do you recommend and why?
Resectable disease
  1. 6.For my situation (resectable disease), which of the standard options do you recommend and why?
High-grade or advanced disease (Hyams III to IV, Kadish C to D)
  1. 7.For my situation (high-grade or advanced disease (hyams iii to iv, kadish c to d)), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Cisplatin, Etoposide, Platinum + etoposide (EP / CE), and what side effects should I expect?
Recurrent or metastatic disease
  1. 9.For my situation (recurrent or metastatic disease), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Lutetium-177 dotatate, Platinum + etoposide (EP / CE), Temozolomide, and what side effects should I expect?
Follow-up
  1. 11.For my situation (follow-up), which of the standard options do you recommend and why?
Any stage
  1. 12.Are there clinical trials I could join, for example of Proton therapy, Lutetium-177 dotatate, Peptide receptor radionuclide therapy (PRRT)?
  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 “No prospective trial has ever been conducted; every recommendation rests on series”. How does that affect my plan?
  5. 16.I read that “Late relapse after ten or more years makes cure hard to define”. How does that affect my plan?

The words I may hear

  • Head and neck subsites (oral cavity, oropharynx, larynx): Head and neck cancer is really several cancers named by exact location: mouth (oral cavity), back of the throat (oropharynx, where HPV cancers arise), voice box (larynx), lower throat (hypopharynx) and behind the nose (nasopharynx).
  • Disease-specific staging and risk systems (FIGO, Ann Arbor, IPI, R-ISS, ELN, IMDC): Beyond the generic TNM system, gynaecological cancers (FIGO), lymphoma (Ann Arbor, IPI), myeloma (R-ISS), AML (ELN), kidney cancer (IMDC), neuroblastoma (INRG) and CLL (Rai, Binet) each have their own system that combines stage, blood tests, genetics and fitness into risk groups.
  • Re-irradiation: Giving radiotherapy again to a region that has already been treated, once thought impossible because normal tissues remember the first dose.
  • Rare cancers: Rare cancers are those with fewer than about 6 new cases per 100,000 people per year.
  • Chemoradiation (chemoradiotherapy, CRT): Radiotherapy given at the same time as chemotherapy, which sensitises the cancer to radiation.

Tests and results to bring

Diagnosis and staging: Endoscopic biopsy with immunohistochemistry, MRI and CT of the sinuses and skull base, neck imaging, DOTATATE PET where available.

Biomarker results to ask for: Hyams grade (I to IV; strongest prognostic factor), Kadish or modified Kadish stage (A to D), Synaptophysin, chromogranin and S100 sustentacular cell pattern (diagnosis), Somatostatin receptor expression and DOTATATE PET uptake (imaging, radioligand eligibility), IDH2 mutation (subset of high-grade tumours), Neck node status on MRI or PET-CT.

Scans and tests linked to this cancer: CT (computed tomography), Histopathology & immunohistochemistry, MRI, PET/CT, Somatostatin receptor PET (68Ga/64Cu-DOTATATE).

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