Familial adenomatous polyposis-associated colorectal cancer
Prepared with OnCo (onco.cc/prep/fap-associated-colorectal-cancer/). Orientation, not medical advice; your team knows your case.
My details
What I know, what is unclear, changes to discuss
Saved in this browserMy questions
9 on the sheet- 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 Germline APC variant, and MUTYH testing when polyposis is present without an APC variant, Polyp count and distribution at colonoscopy, which set the timing of surgery, Spigelman stage of duodenal polyposis and the state of the ampulla, which set upper gastrointestinal surveillance), 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?
- 5.For my situation (surveillance and prophylactic surgery in carriers), which of the standard options do you recommend and why?
- 6.For my situation (cancer arising in polyposis), 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?
- 8.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 9.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
The words I may hear
- Colonoscopy: Examining the whole large bowel with a flexible camera; polyps found on the way are removed (polypectomy), which prevents most bowel cancers.
- Surveillance intervals after polypectomy: After polyps are removed, the date of your next colonoscopy is set by what was found, not by habit.
- Adenoma-carcinoma sequence: The adenoma-carcinoma sequence is the step-by-step route by which a normal bowel lining becomes a polyp and the polyp becomes a cancer, as genetic faults pile up over years.
- Polyp types in the bowel: A polyp is a growth on the lining of the bowel.
- Colectomy: Removing the part of the colon containing the cancer along with its blood supply and lymph nodes, then joining the ends.
- Germline vs somatic mutations: Germline mutations are inherited and in every cell; somatic mutations arise in the tumour only.
- Endoscopy (EGD, EUS, ERCP): Looking inside a hollow organ with a camera on a flexible tube, taking biopsies and sometimes treating on the spot.
Tests and results to bring
Biomarker results to ask for: Germline APC variant, and MUTYH testing when polyposis is present without an APC variant, Polyp count and distribution at colonoscopy, which set the timing of surgery, Spigelman stage of duodenal polyposis and the state of the ampulla, which set upper gastrointestinal surveillance.
Scans and tests linked to this cancer: Germline (hereditary) testing, Histopathology & immunohistochemistry.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Cancer arising in polyposis: Staged and treated as colorectal adenocarcinoma of the same stage, with the extent of resection decided by the field of polyps rather than by the single tumour; the parent record carries the systemic therapy rows. (Colectomy, CAPOX (capecitabine, oxaliplatin), FOLFOX (5-FU, leucovorin, oxaliplatin))
- Surveillance and prophylactic surgery in carriers: Colonoscopy from about age 10 to 12 at one to two-yearly intervals; prophylactic colectomy before cancer develops, with the type and timing decided case by case; lifelong endoscopic surveillance of the retained rectum or ileal pouch afterwards; upper gastrointestinal endoscopy with ampullary visualisation at intervals set by duodenal and gastric findings. (Colonoscopy, Colectomy, Endoscopy (EGD, EUS, ERCP), Germline (hereditary) testing, Surveillance intervals after polypectomy)
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.