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Living with cancer· Appointment prep

Appointment sheet: Salivary gland cancers

One page to bring and write on: your details, the questions for Salivary gland cancers 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

Salivary gland cancers

Prepared with OnCo (onco.cc/prep/salivary-gland/). 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

15 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 Histotype with fusion confirmation, HER2 IHC/ISH and androgen receptor IHC, NTRK fusion, NOTCH1 mutation, Perineural invasion, grade, margin 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, resectable
  1. 5.For my situation (localised, resectable), which of the standard options do you recommend and why?
Unresectable localised
  1. 6.For my situation (unresectable localised), which of the standard options do you recommend and why?
Recurrent/metastatic, subtype-directed
  1. 7.For my situation (recurrent/metastatic, subtype-directed), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Trastuzumab, Docetaxel, Trastuzumab deruxtecan or related drugs, and what side effects should I expect?
Recurrent/metastatic, other
  1. 9.For my situation (recurrent/metastatic, other), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Cisplatin, Doxorubicin, Cyclophosphamide or related drugs, and what side effects should I expect?
Any stage
  1. 11.Are there clinical trials I could join, for example of Trastuzumab deruxtecan, Lenvatinib, Larotrectinib, Carbon-ion therapy?
  2. 12.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 13.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 14.I read that “Adenoid cystic carcinoma: no drug induces meaningful shrinkage; 20-year survival remains poor”. How does that affect my plan?
  5. 15.I read that “Trials are tiny; most evidence is phase 2 or retrospective”. How does that affect my plan?

The words I may hear

  • Gene fusion: A gene fusion is two genes broken and joined together, creating a hybrid protein that can drive cancer.
  • Tumour-agnostic (tissue-agnostic) approval: A tumour-agnostic approval lets a drug be used for any cancer carrying a specific molecular feature, regardless of where it started.
  • Rare cancers: Rare cancers are those with fewer than about 6 new cases per 100,000 people per year.

Tests and results to bring

Biomarker results to ask for: Histotype with fusion confirmation (MYB, MAML2, ETV6-NTRK3, NR4A3), HER2 IHC/ISH and androgen receptor IHC (salivary duct carcinoma), NTRK fusion (secretory carcinoma), NOTCH1 mutation (adenoid cystic, poor prognosis), Perineural invasion, grade, margin status, PD-L1 / TMB (rarely high).

Scans and tests linked to this cancer: Comprehensive genomic profiling.

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