OnCo

Sign in to keep your watchlist

Your watched pages live in this browser. Sign in with an email link and OnCo keeps the same list on every device you use. Only your email address and your watchlist are stored.

Living with cancer· Appointment prep

Appointment sheet: Localised small bowel adenocarcinoma (stage I to III, resected)

One page to bring and write on: your details, the questions for Localised small bowel adenocarcinoma (stage I to III, resected) plus your own, the words you may hear, what to bring, the treatments the standard of care names, and room for the answers and agreed next steps. What you type stays in this browser. Print it or save it as a PDF. New to all this? Start with the first 60 days. Orientation, not medical advice.

Tick the questions to print

All of this cancer's questions start ticked. Untick what does not apply; ticks are kept in this browser. .

Your own questions

Shared with the prep pack, so questions you add there appear here too.

Print or save as PDF

Use (or Ctrl+P, Cmd+P on a Mac). To keep a copy, choose Save as PDF as the destination in the print dialog. Only the sheet prints; the controls stay on screen. Your typed notes print where you typed them; empty fields print as ruled lines to write on.

Appointment sheet

Localised small bowel adenocarcinoma (stage I to III, resected)

Prepared with OnCo (onco.cc/prep/localised-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 browser
What I know so far
What is unclear to me
Changes since last time

My questions

15 on the sheet
Newly diagnosed
  1. 1.What is my exact diagnosis, stage, and grade, and which tests established them?
  2. 2.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?
  3. 3.Which subtype is my cancer, and does that change the recommended treatment?
  4. 4.Is germline (inherited) genetic testing recommended for me or my family?
Diagnosis and staging
  1. 5.For my situation (diagnosis and staging), which of the standard options do you recommend and why?
Duodenal tumours
  1. 6.For my situation (duodenal tumours), which of the standard options do you recommend and why?
Jejunal and ileal tumours
  1. 7.For my situation (jejunal and ileal tumours), which of the standard options do you recommend and why?
After surgery
  1. 8.For my situation (after surgery), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for CAPOX (capecitabine, oxaliplatin), FOLFOX (5-FU, leucovorin, oxaliplatin), and what side effects should I expect?
Surveillance
  1. 10.For my situation (surveillance), which of the standard options do you recommend and why?
Any stage
  1. 11.Are there clinical trials I could join, for example of CAPOX (capecitabine, oxaliplatin), FOLFOX (5-FU, leucovorin, oxaliplatin), Signatera?
  2. 12.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 13.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 14.I read that “Whether adjuvant chemotherapy improves survival awaits the full BALLAD results”. How does that affect my plan?
  5. 15.I read that “Diagnosis is often delayed by months because the small bowel is hard to image”. How does that affect my plan?

The words I may hear

  • 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.

Tests and results to bring

Diagnosis and staging: Endoscopy or enteroscopy with biopsy, CT of chest, abdomen and pelvis, mismatch repair testing and germline assessment.

Biomarker results to ask for: Mismatch repair and microsatellite status (all patients), Node status and number of nodes examined (at least eight), Germline testing for Lynch syndrome, FAP and Peutz-Jeghers where indicated, HER2 amplification and KRAS status (baseline for later therapy), Circulating tumour DNA after surgery (investigational), Crohn's disease or coeliac disease history.

Scans and tests linked to this cancer: CT (computed tomography), Germline (hereditary) testing, Liquid biopsy (ctDNA), MRI, 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

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 browser
What I was told
Agreed next steps, dates and who to call