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In familial adenomatous polyposis a person inherits a fault in the APC gene and grows hundreds or thousands of polyps in the large bowel from their teens. Left alone, almost all of them become cancer by about 40, so the bowel is watched from childhood and usually removed before that happens; the cancers that do occur are treated like ordinary bowel cancer. Below, week by week, is what OnCo's record of Familial adenomatous polyposis-associated colorectal cancer 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.
Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.
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.
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.
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.
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.
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.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
Every term links to the glossary.