The first 60 days: Advanced and metastatic small bowel adenocarcinoma
Advanced small bowel adenocarcinoma is cancer of the small intestine that has spread to the liver, peritoneum or elsewhere, treated with the chemotherapy used for bowel cancer, oxaliplatin with a fluoropyrimidine, then taxanes or irinotecan. The exception is the sizeable minority with mismatch-repair-deficient tumours, for whom the immunotherapy pembrolizumab works far better than chemotherapy. Below, week by week, is what OnCo's record of Advanced and metastatic small bowel adenocarcinoma says about the first two months: the order is typical, the timing is yours to ask about. Sections appear only where the record has something to say. Orientation, not medical advice.
What happens now
Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.
Ask which of these were tested and what the results were; see the report reader for what each value means.
These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.
- PathologistNamed in the standard of care for: All patients.
- SurgeonNamed in the standard of care for: Limited metastases.
- Medical oncologistNamed in the standard of care for: First line, mismatch-repair proficient, First line, mismatch-repair deficient, Second line, Limited metastases.
A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.
Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.
Resection of liver metastases or cytoreductive surgery with HIPEC for limited peritoneal disease in selected patients.
CAPOX or FOLFOX, with bevacizumab considered; taxane-based regimens as an alternative.
Pembrolizumab (tumour-agnostic approval); nivolumab with ipilimumab as an alternative.
Comprehensive genomic profiling to find HER2, mismatch repair deficiency and rare actionable alterations; referral to trials.
FOLFIRI or a taxane; pembrolizumab if mismatch-repair deficient and not yet given; trastuzumab-based therapy or trastuzumab deruxtecan for HER2-positive tumours.
Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.
Newly diagnosed
- What is my exact diagnosis, stage, and grade, and which tests established them?Everything else follows from an accurate stage and subtype.
- 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?These results decide eligibility for targeted therapy, immunotherapy, and trials.
- Which subtype is my cancer, and does that change the recommended treatment?Recognised subtypes for this cancer include Synchronous metastatic small bowel adenocarcinoma, Recurrent small bowel adenocarcinoma after resection, Mismatch-repair-deficient advanced small bowel adenocarcinoma.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
First line, mismatch-repair proficient
- For my situation (first line, mismatch-repair proficient), which of the standard options do you recommend and why?Guideline options include: CAPOX or FOLFOX, with bevacizumab considered; taxane-based regimens as an alternative.
- Am I a candidate for CAPOX (capecitabine, oxaliplatin), FOLFOX (5-FU, leucovorin, oxaliplatin), Bevacizumab or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
First line, mismatch-repair deficient
- For my situation (first line, mismatch-repair deficient), which of the standard options do you recommend and why?Guideline options include: Pembrolizumab (tumour-agnostic approval); nivolumab with ipilimumab as an alternative.
- Am I a candidate for Pembrolizumab, Nivolumab, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Second line
- For my situation (second line), which of the standard options do you recommend and why?Guideline options include: FOLFIRI or a taxane; pembrolizumab if mismatch-repair deficient and not yet given; trastuzumab-based therapy or trastuzumab deruxtecan for HER2-positive tumours.
- Am I a candidate for FOLFIRI (5-FU, leucovorin, irinotecan), Paclitaxel / nab-paclitaxel, Pembrolizumab or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Limited metastases
- For my situation (limited metastases), which of the standard options do you recommend and why?Guideline options include: Resection of liver metastases or cytoreductive surgery with HIPEC for limited peritoneal disease in selected patients.
All patients
- For my situation (all patients), which of the standard options do you recommend and why?Guideline options include: Comprehensive genomic profiling to find HER2, mismatch repair deficiency and rare actionable alterations; referral to trials.
Any stage
- Are there clinical trials I could join, for example of Pembrolizumab, Trastuzumab deruxtecan, Signatera?Trials are how the next standard of care is set; asking early keeps options open.
- Would a second opinion at a high-volume centre change anything, and can you help arrange it?Rare or high-stakes decisions benefit from a centre that treats many similar patients.
- What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?Supportive care improves quality of life and helps patients complete treatment.
- I read that “No randomised phase 3 trial has ever been completed in advanced small bowel adenocarcinoma”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Mismatch-repair-proficient tumours have no effective immunotherapy”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Advanced and metastatic small bowel adenocarcinoma: the full pageAdvanced small bowel adenocarcinoma is cancer of the small intestine that has spread to the liver, peritoneum or elsewhere, treated with the chemotherapy used for bowel cancer, oxaliplatin with a fluoropyrimidine, then taxanes or irinotecan. The exception is the sizeable minority with mismatch-repair-deficient tumours, for whom the immunotherapy pembrolizumab works far better than chemotherapy.
- One-page appointment sheetYour questions, the words you may hear, what to bring, and space for the answers. Print it.
- Treatment sequencingWhich treatment tends to follow which, line by line.
- NavigatorStandard of care for your stage, what you have tried, and trials near you.
- 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.
Every term links to the glossary.