Small bowel cancer is a rare cancer of the small intestine, the long tube between the stomach and the colon. There are four main types: adenocarcinoma, usually in the duodenum; neuroendocrine tumours, mostly in the ileum; gastrointestinal stromal tumours (GIST); and lymphoma. Each is treated in a distinct way.
Because the small bowel is hard to reach with standard endoscopes and the symptoms are non-specific, diagnosis is often delayed, and some tumours are discovered only at emergency surgery for a blockage. Surgery is the mainstay for most types, with drug treatment chosen by the tumour type.
Symptoms
- Cramping abdominal pain that comes and goes, often after meals
- Unexplained weight loss
- Iron deficiency anaemia or black stools from slow bleeding, with normal gastroscopy and colonoscopy
- Nausea and vomiting with bloating, from partial obstruction
- Jaundice when a tumour in the duodenum blocks the bile duct
- Flushing and diarrhoea with neuroendocrine tumours that have spread to the liver
- A lump felt in the abdomen
Causes and risk factors
Conditions that cause long-term inflammation or polyps in the small intestine increase risk: Crohn's disease, coeliac disease, particularly when untreated, familial adenomatous polyposis, Lynch syndrome, Peutz-Jeghers syndrome and cystic fibrosis. Smoking, alcohol and a diet rich in red and smoked meat may contribute. Neurofibromatosis type 1 predisposes to GIST. For most people with a small bowel tumour, no cause is identified. Its rarity compared with colon cancer, despite the small intestine's much greater length, is not fully explained.
How it is diagnosed
- CT or MR enterography: Scans performed after drinking fluid to distend the bowel, giving the best overall view of the small intestine.
- Capsule endoscopy: A swallowed camera pill that photographs the lining, useful for unexplained bleeding. It is avoided when a narrowing is suspected, as the capsule may lodge.
- Device-assisted enteroscopy: Balloon enteroscopy reaches deep into the small bowel and allows biopsy or marking of a lesion.
- Upper endoscopy: Reaches tumours in the duodenum and permits biopsy.
- Specific tests by tumour type: Gallium-68 DOTATATE PET-CT and chromogranin A for neuroendocrine tumours, and KIT mutation testing for GIST.
Treatment options
- Segmental resection: Removal of the affected length of bowel with its lymph nodes, often by keyhole surgery, with the ends rejoined. Tumours of the duodenum may need a Whipple operation.
- Chemotherapy: For adenocarcinoma with lymph node involvement or spread, using regimens borrowed from colorectal cancer, since trial evidence in this rare cancer is limited.
- Imatinib: Tablets for GIST before or after surgery and for advanced disease, depending on mutation type and risk.
- Somatostatin analogues and PRRT: Monthly injections, and radionuclide therapy in selected cases, for neuroendocrine tumours.
- Lymphoma treatment: Chemotherapy with or without antibodies, led by haematologists, with surgery reserved for complications.
- Relief of obstruction: Stents, bypass surgery and nutritional support when a tumour cannot be removed.
When it is urgent
Go to the nearest emergency department for severe cramping pain with repeated vomiting, a swollen abdomen and no passage of stool or wind, which indicates bowel obstruction, for vomiting blood or passing large amounts of black or red stool, or for sudden severe abdominal pain with fever, which may mean perforation. These cannot wait for planned travel.
Travelling to Türkiye for treatment
As few doctors see this cancer often, a specialist opinion and access to capsule endoscopy, balloon enteroscopy or DOTATATE PET-CT can be good reasons to travel for the work-up, which generally takes 4 to 7 days. A planned bowel resection needs about 2 weeks before flying home. Chemotherapy over several months, daily imatinib with monitoring, or monthly injections for neuroendocrine tumours should be supervised locally, with the treatment plan shared between teams.
Send your reports, scans and a short history and a Clinic-Y coordinator replies within 24 hours with suitable teams and written, all-inclusive proposals side by side. Reviewing your case is free.
Frequently Asked Questions
Why did my earlier endoscopies miss it?
Gastroscopy and colonoscopy examine only the two ends of the digestive tract. Several metres of small bowel in between require different tests.
Is it treated like colon cancer?
Adenocarcinoma of the small bowel is treated along similar lines, because dedicated trials are scarce. GIST, neuroendocrine tumours and lymphoma follow completely different pathways.
I have coeliac disease. Should I worry?
The absolute risk remains small, and a strict gluten-free diet lowers it. Report new weight loss, pain or anaemia despite the diet.
Can I live normally after part of my small bowel is removed?
Usually yes. The intestine has a large reserve. Removal of the last part of the ileum may call for vitamin B12 injections and can cause looser stools.