Appointment sheet
Advanced and metastatic small bowel adenocarcinoma
Prepared with OnCo (onco.cc/prep/advanced-small-bowel-adenocarcinoma/). 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
17 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 Mismatch repair and microsatellite status, HER2 amplification or ERBB2 mutation, KRAS, BRAF and other alterations on comprehensive genomic profiling, Tumour mutational burden, CEA and CA 19-9 for monitoring), 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?
First line, mismatch-repair proficient
- 5.For my situation (first line, mismatch-repair proficient), which of the standard options do you recommend and why?
- 6.Am I a candidate for CAPOX (capecitabine, oxaliplatin), FOLFOX (5-FU, leucovorin, oxaliplatin), Bevacizumab or related drugs, and what side effects should I expect?
First line, mismatch-repair deficient
- 7.For my situation (first line, mismatch-repair deficient), which of the standard options do you recommend and why?
- 8.Am I a candidate for Pembrolizumab, Nivolumab, and what side effects should I expect?
Second line
- 9.For my situation (second line), which of the standard options do you recommend and why?
- 10.Am I a candidate for FOLFIRI (5-FU, leucovorin, irinotecan), Paclitaxel / nab-paclitaxel, Pembrolizumab or related drugs, and what side effects should I expect?
Limited metastases
- 11.For my situation (limited metastases), which of the standard options do you recommend and why?
All patients
- 12.For my situation (all patients), which of the standard options do you recommend and why?
Any stage
- 13.Are there clinical trials I could join, for example of Pembrolizumab, Trastuzumab deruxtecan, Signatera?
- 14.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 15.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 16.I read that “No randomised phase 3 trial has ever been completed in advanced small bowel adenocarcinoma”. How does that affect my plan?
- 17.I read that “Mismatch-repair-proficient tumours have no effective immunotherapy”. How does that affect my plan?
The words I may hear
- Peritoneal metastasis: Spread across the lining of the abdomen, the most common way stomach cancer recurs and the hardest to treat.
- Hepatectomy (liver resection): Cutting out the part of the liver containing tumour.
- 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.
- Microsatellite instability (MSI-H) / mismatch repair deficiency (dMMR): Microsatellite instability is the mark of a broken DNA spell-checker (loss of MLH1, MSH2, MSH6 or PMS2) that leaves thousands of mutations, so the tumour displays abnormal proteins that T cells can recognise.
Tests and results to bring
Biomarker results to ask for: Mismatch repair and microsatellite status (pembrolizumab), HER2 amplification or ERBB2 mutation (HER2-directed therapy), KRAS, BRAF and other alterations on comprehensive genomic profiling, Tumour mutational burden, CEA and CA 19-9 for monitoring, Circulating tumour DNA (investigational).
Scans and tests linked to this cancer: Comprehensive genomic profiling, Liquid biopsy (ctDNA), MRD / molecular residual disease testing.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Limited metastases: Resection of liver metastases or cytoreductive surgery with HIPEC for limited peritoneal disease in selected patients. (Hepatectomy (liver resection), HIPEC / PIPAC (intraperitoneal chemotherapy), Peritoneal metastasis)
- First line, mismatch-repair proficient: CAPOX or FOLFOX, with bevacizumab considered; taxane-based regimens as an alternative. (CAPOX (capecitabine, oxaliplatin), FOLFOX (5-FU, leucovorin, oxaliplatin), Bevacizumab, Paclitaxel / nab-paclitaxel, Cytotoxic chemotherapy)
- First line, mismatch-repair deficient: Pembrolizumab (tumour-agnostic approval); nivolumab with ipilimumab as an alternative. (Pembrolizumab, Nivolumab, Microsatellite instability (MSI-H) / mismatch repair deficiency (dMMR), Mismatch repair & microsatellite instability, Immune checkpoint inhibitors)
- All patients: Comprehensive genomic profiling to find HER2, mismatch repair deficiency and rare actionable alterations; referral to trials. (Comprehensive genomic profiling, Tumour-agnostic (tissue-agnostic) approval)
- Second line: FOLFIRI or a taxane; pembrolizumab if mismatch-repair deficient and not yet given; trastuzumab-based therapy or trastuzumab deruxtecan for HER2-positive tumours. (FOLFIRI (5-FU, leucovorin, irinotecan), Paclitaxel / nab-paclitaxel, Pembrolizumab, Trastuzumab deruxtecan)
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