The first 60 days: Localised small bowel adenocarcinoma (stage I to III, resected)
Localised small bowel adenocarcinoma is cancer of the duodenum, jejunum or ileum that has not spread beyond nearby lymph nodes and can be removed by surgery, the only cure. Duodenal tumours need a Whipple operation and tumours further along a segmental resection; chemotherapy afterwards is offered for node-positive disease by analogy with colon cancer while the BALLAD trial tests whether it helps. Below, week by week, is what OnCo's record of Localised small bowel adenocarcinoma (stage I to III, resected) 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.
Endoscopy or enteroscopy with biopsy, CT of chest, abdomen and pelvis, mismatch repair testing and germline assessment.
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: Diagnosis and staging.
- RadiologistNamed in the standard of care for: Diagnosis and staging, Surveillance.
- SurgeonNamed in the standard of care for: Duodenal tumours, Jejunal and ileal tumours.
- Medical oncologistNamed in the standard of care for: After surgery.
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.
Observation for stage I and low-risk stage II; adjuvant CAPOX or FOLFOX for stage III and high-risk stage II, extrapolated from colon cancer pending BALLAD.
Pancreaticoduodenectomy for proximal duodenal tumours; segmental resection for distal duodenal tumours; endoscopic resection only for adenomas.
Segmental resection with wide mesenteric lymphadenectomy; right hemicolectomy for terminal ileal tumours.
CT and CEA every six to twelve months; endoscopic surveillance of the remaining duodenum in FAP.
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, Node status and number of nodes examined, Germline testing for Lynch syndrome, FAP and Peutz-Jeghers where indicated, HER2 amplification and KRAS status, Circulating tumour DNA after surgery), 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 Localised duodenal adenocarcinoma, Localised jejunal adenocarcinoma, Localised ileal adenocarcinoma.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Diagnosis and staging
- For my situation (diagnosis and staging), which of the standard options do you recommend and why?Guideline options include: Endoscopy or enteroscopy with biopsy, CT of chest, abdomen and pelvis, mismatch repair testing and germline assessment.
Duodenal tumours
- For my situation (duodenal tumours), which of the standard options do you recommend and why?Guideline options include: Pancreaticoduodenectomy for proximal duodenal tumours; segmental resection for distal duodenal tumours; endoscopic resection only for adenomas.
Jejunal and ileal tumours
- For my situation (jejunal and ileal tumours), which of the standard options do you recommend and why?Guideline options include: Segmental resection with wide mesenteric lymphadenectomy; right hemicolectomy for terminal ileal tumours.
After surgery
- For my situation (after surgery), which of the standard options do you recommend and why?Guideline options include: Observation for stage I and low-risk stage II; adjuvant CAPOX or FOLFOX for stage III and high-risk stage II, extrapolated from colon cancer pending BALLAD.
- Am I a candidate for CAPOX (capecitabine, oxaliplatin), FOLFOX (5-FU, leucovorin, oxaliplatin), and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Surveillance
- For my situation (surveillance), which of the standard options do you recommend and why?Guideline options include: CT and CEA every six to twelve months; endoscopic surveillance of the remaining duodenum in FAP.
Any stage
- Are there clinical trials I could join, for example of CAPOX (capecitabine, oxaliplatin), FOLFOX (5-FU, leucovorin, oxaliplatin), 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 “Whether adjuvant chemotherapy improves survival awaits the full BALLAD results”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Diagnosis is often delayed by months because the small bowel is hard to image”. 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.
- Localised small bowel adenocarcinoma (stage I to III, resected): the full pageLocalised small bowel adenocarcinoma is cancer of the duodenum, jejunum or ileum that has not spread beyond nearby lymph nodes and can be removed by surgery, the only cure. Duodenal tumours need a Whipple operation and tumours further along a segmental resection; chemotherapy afterwards is offered for node-positive disease by analogy with colon cancer while the BALLAD trial tests whether it helps.
- 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.
- Colectomy: Removing the part of the colon containing the cancer along with its blood supply and lymph nodes, then joining the ends.
- 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.
- 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.
- 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.
- Lymphadenectomy (lymph node dissection): Surgically removing the lymph nodes that drain a tumour, both to stage the cancer and to clear any spread.
- 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.