Appointment sheet
Adenoid cystic carcinoma
Prepared with OnCo (onco.cc/prep/adenoid-cystic-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 browserWhat I know so far
What is unclear to me
Changes since last time
My questions
19 on the sheetNewly diagnosed
- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 2.Which biomarkers have been tested on my tumour (for example MYB immunohistochemistry or MYB-NFIB fusion by FISH or sequencing, NOTCH1 mutation, Perineural invasion and margin status, Solid component and grade, Ki-67), and what were the results?
- 3.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
Localised, resectable
- 5.For my situation (localised, resectable), which of the standard options do you recommend and why?
Unresectable or inoperable
- 6.For my situation (unresectable or inoperable), which of the standard options do you recommend and why?
Slow-growing metastatic disease
- 7.For my situation (slow-growing metastatic disease), which of the standard options do you recommend and why?
Progressive metastatic disease
- 8.For my situation (progressive metastatic disease), which of the standard options do you recommend and why?
- 9.Am I a candidate for Lenvatinib, Axitinib, and what side effects should I expect?
Chemotherapy
- 10.For my situation (chemotherapy), which of the standard options do you recommend and why?
- 11.Am I a candidate for Cisplatin, Doxorubicin, Cyclophosphamide, and what side effects should I expect?
Trials
- 12.For my situation (trials), which of the standard options do you recommend and why?
- 13.Am I a candidate for REM-422, and what side effects should I expect?
- 14.How do the results of Study of REM-422 in Patients With Recurrent, Metastatic, or Unresectable Adenoid Cystic Carcinoma and Clinical Trial of HG146 Administered to Participants with Adenoid Cystic Carcinoma apply to someone like me?
Any stage
- 15.Are there clinical trials I could join, for example of REM-422, Study of REM-422 in Patients With Recurrent, Metastatic, or Unresectable Adenoid Cystic Carcinoma, Clinical Trial of HG146 Administered to Participants with Adenoid Cystic Carcinoma, Lenvatinib?
- 16.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 17.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 18.I read that “No drug shrinks the disease reliably; kinase inhibitors only slow it”. How does that affect my plan?
- 19.I read that “When to start treatment for indolent lung metastases”. How does that affect my plan?
Tests and results to bring
Biomarker results to ask for: MYB immunohistochemistry or MYB-NFIB fusion by FISH or sequencing, NOTCH1 mutation (aggressive subset, NOTCH inhibitor trials), Perineural invasion and margin status, Solid component and grade, Ki-67, PD-L1 (usually absent).
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Localised, resectable: Wide resection including involved nerves where needed, with neck dissection for node-positive disease, followed by postoperative radiotherapy to the bed and nerve pathways. (IMRT / IGRT (modern external beam), Proton therapy)
- Unresectable or inoperable: Definitive radiotherapy; carbon-ion or proton therapy where available (COSMIC, Heidelberg; fast-neutron series). (Carbon-ion therapy, Proton therapy, IMRT / IGRT (modern external beam))
- Slow-growing metastatic disease: Observation with scans every few months; stereotactic radiotherapy or resection for isolated symptomatic metastases. (SBRT / SABR (stereotactic radiotherapy))
- Progressive metastatic disease: Lenvatinib or axitinib (phase 2 evidence); clinical trials preferred. (Lenvatinib, Axitinib, Small-molecule kinase inhibitors)
- Chemotherapy: Cisplatin with doxorubicin and cyclophosphamide, or single agents, for symptomatic disease after kinase inhibitors; responses are uncommon. (Cisplatin, Doxorubicin, Cyclophosphamide)
- Trials: MYB-directed REM-422, HG146 and NOTCH inhibitors for NOTCH1-mutant disease. (REM-422, Study of REM-422 in Patients With Recurrent, Metastatic, or Unresectable Adenoid Cystic Carcinoma, Clinical Trial of HG146 Administered to Participants with Adenoid Cystic Carcinoma)
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 browserWhat I was told
Agreed next steps, dates and who to call