Appointment sheet
Small intestine cancer (small bowel adenocarcinoma)
Prepared with OnCo (onco.cc/prep/small-bowel/). 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
16 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 MSI / mismatch repairstatus, HER2 amplification or ERBB2 mutation, KRAS, BRAF, TP53, Germline testing where Lynch, FAP or Peutz-Jeghers is suspected, 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?
Localised
- 5.For my situation (localised), which of the standard options do you recommend and why?
Adjuvant (stage III; selected stage II)
- 6.For my situation (adjuvant (stage iii; selected stage ii)), which of the standard options do you recommend and why?
- 7.Am I a candidate for CAPOX (capecitabine, oxaliplatin), FOLFOX (5-FU, leucovorin, oxaliplatin), and what side effects should I expect?
Advanced, MSI-high / dMMR
- 8.For my situation (advanced, msi-high / dmmr), which of the standard options do you recommend and why?
- 9.Am I a candidate for Pembrolizumab, and what side effects should I expect?
Advanced, MSS
- 10.For my situation (advanced, mss), which of the standard options do you recommend and why?
- 11.Am I a candidate for CAPOX (capecitabine, oxaliplatin), FOLFOX (5-FU, leucovorin, oxaliplatin), FOLFIRI (5-FU, leucovorin, irinotecan) or related drugs, and what side effects should I expect?
Any stage
- 12.Are there clinical trials I could join, for example of Pembrolizumab, Trastuzumab deruxtecan, Signatera?
- 13.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 14.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 15.I read that “Adjuvant chemotherapy benefit is unproven; BALLAD is the randomised answer”. How does that affect my plan?
- 16.I read that “Second-line therapy for MSS disease is weak; HER2 antibody-drug conjugates and trials in rare GI tumours are the route”. How does that affect my plan?
The words I may hear
- Lynch syndrome: Lynch syndrome is the most common inherited cancer syndrome: a faulty mismatch-repair gene raises lifetime bowel cancer risk to 40-80% and also endometrial and other cancers.
- Lymphadenectomy (lymph node dissection): Surgically removing the lymph nodes that drain a tumour, both to stage the cancer and to clear any spread.
- Whipple procedure (pancreaticoduodenectomy): The big operation for cancers of the head of the pancreas: the surgeon removes the pancreatic head, the duodenum, the gallbladder and part of the bile duct, then reconnects everything.
- 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.
- Endoscopy (EGD, EUS, ERCP): Looking inside a hollow organ with a camera on a flexible tube, taking biopsies and sometimes treating on the spot.
- Hereditary cancer syndromes: About 5-10% of cancers arise from an inherited gene fault.
Tests and results to bring
Biomarker results to ask for: MSI / mismatch repair (dMMR) status, HER2 amplification or ERBB2 mutation, KRAS, BRAF (rarely V600E), TP53, Germline testing where Lynch, FAP or Peutz-Jeghers is suspected, CEA and CA 19-9 for monitoring, Coeliac serology and Crohn's history in the work-up.
Scans and tests linked to this cancer: CEA surveillance after colorectal cancer surgery, Comprehensive genomic profiling, Endoscopic ultrasound and EBUS systems, Germline (hereditary) testing, Liquid biopsy (ctDNA), MRI.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Localised: Segmental resection with en bloc lymphadenectomy; pancreatoduodenectomy for duodenal tumours not amenable to segmental resection. (Whipple procedure (pancreaticoduodenectomy), Lymphadenectomy (lymph node dissection))
- Adjuvant (stage III; selected stage II): Fluoropyrimidine with oxaliplatin (CAPOX or FOLFOX) for six months, extrapolated from colon cancer; BALLAD is the randomised test. (CAPOX (capecitabine, oxaliplatin), FOLFOX (5-FU, leucovorin, oxaliplatin))
- Advanced, MSI-high / dMMR: Pembrolizumab first line (tumour-agnostic approval; ZEBRA and KEYNOTE-158 cohorts). (Pembrolizumab, Microsatellite instability (MSI-H) / mismatch repair deficiency (dMMR), Mismatch repair & microsatellite instability)
- Advanced, MSS: CAPOX or FOLFOX first line; taxane- or irinotecan-based second line; HER2-directed therapy in trials; clinical trial enrolment encouraged. (CAPOX (capecitabine, oxaliplatin), FOLFOX (5-FU, leucovorin, oxaliplatin), FOLFIRI (5-FU, leucovorin, irinotecan), Paclitaxel / nab-paclitaxel)
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