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Condition · 1 treatment path

Familial Adenomatous Polyposis (FAP)

Familial adenomatous polyposis (FAP) is an inherited condition in which hundreds to thousands of polyps grow in the colon from adolescence. Without treatment it carries an almost certain risk of colorectal cancer.

Severe

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About familial adenomatous polyposis (fap)

What to know

It is caused by a mutation in the APC gene and is usually found through family screening or genetic testing, or because of bleeding, diarrhoea or anaemia. Colonoscopy shows the polyps, and genetic testing confirms the diagnosis. Polyps can also develop in the duodenum and elsewhere. Cancer commonly appears by the fourth decade if the colon is not removed.

Relatives are offered genetic testing and regular colonoscopy from adolescence. Preventive surgery is the standard treatment: total colectomy with ileorectal anastomosis, or proctocolectomy with a J-pouch (ileal pouch-anal anastomosis), timed to suit the person. Lifelong surveillance of the upper gut and rectum continues afterwards. Care is best at a specialist polyposis registry, and some people look abroad for experienced pouch surgery.

Pre-flight workup

Tests to have already done

  • Colonoscopy reports and polyp counts, with biopsy results showing any dysplasia or cancer.
  • Genetic test results for the APC gene (or MUTYH, in related forms) and the family history of polyps or cancers.
  • Upper endoscopy findings, since polyps also form in the stomach and duodenum.
  • CT or MRI findings, and a record of any thyroid, desmoid tumour or other associated problems.
  • Your age, pregnancy plans, and the family members already tested or treated.

Second opinion

When to get a second look

  • You have been told to delay colon surgery but have many polyps, or are told to operate immediately without genetic confirmation.
  • You are choosing between a J-pouch (ileal pouch) and a rectum-saving operation and want the trade-offs explained.
  • Duodenal polyps have not been checked by endoscopy.
  • Relatives have not been tested.

Talking to your doctor

Questions to ask

  1. Which gene change do I have, and how does it affect my risk and timing of surgery?
  2. Should I have my colon removed now, and what are the options: pouch or rectum-saving surgery?
  3. How will bowel function change, and how many times a day will I pass stools?
  4. How will polyps in the stomach and duodenum be monitored?
  5. How should my children and relatives be screened, and from what age?
  6. What does lifelong surveillance involve?

Outlook

Realistic prognosis

Without colon removal, almost everyone with classic FAP develops colorectal cancer, usually by middle age, so preventive surgery is advised. After surgery, outlook is good, and life expectancy depends mainly on surveillance for polyps in the duodenum and remaining rectum or pouch, and on desmoid tumours. Lifelong follow-up with specialists is essential, and relatives need genetic testing and early screening.

Diagnostic workup

Before you pick a hospital, get the workup right

Severe — workup typically within 48–72 hours

Picking the right treatment is downstream of a complete diagnosis. Skip steps here and the destination surgeon usually re-orders them anyway — at higher cost and another week on the ground.

  1. Confirm the diagnosis on imaging or labs

    For familial adenomatous polyposis (fap), plan on the workup your home doctor would order anyway — typically a recent specialist consult plus the imaging / labs the destination team will need to quote accurately. Anything older than 90 days usually gets re-done.

  2. See a oncology specialist locally first

    An in-person clinical exam at home — even a single consult — costs little and dramatically improves the destination plan. Bring back: written impression, recommended procedure, surgical-risk class, and any contra-indications.

  3. Send us the file for a free second opinion

    Two surgeons in our medical panel review the workup independently. They tell you whether they'd operate, watch, or refer — even if that means recommending against travel.

  4. Pick a path with timeline + cost in writing

    Once a treatment is the right call, we line up 2–3 hospital options with itemized quotes, surgeon profiles, and a travel timeline. You hold the file — switch hospitals or step away at any point.

04 · FAQ

Common questions about familial adenomatous polyposis (fap)

Why is colon removal advised?

The hundreds of polyps almost always turn cancerous if the colon is left in place, so removal prevents cancer. Timing depends on polyp burden and age.

What is a J-pouch?

A reservoir made from the end of the small intestine and joined to the anus, allowing you to pass stool normally without a permanent stoma.

Should my children be tested?

Usually yes, once the family gene change is known. Screening colonoscopy often begins in the early teens for those who carry it.

Clinical context

Working up familial adenomatous polyposis (fap) properly

A condition like familial adenomatous polyposis (fap) is rarely well-served by jumping straight to treatment shopping. The sequence below is what a oncology specialist would expect to see completed — and the absence of any step is the right cue to delay travel decisions.

Diagnostic workup, in sequence

  1. First-line clinical assessment

    History, physical exam, and risk-factor review by a senior generalist or oncology specialist. Symptoms list, family history, prior workup notes, and current medication list should travel with the patient.

  2. Standard imaging + labs

    Baseline blood work, condition-specific imaging (ultrasound / X-ray / MRI / CT — depending on indication), and ECG / pulmonary function as relevant. Bring digital copies of any prior imaging — saves repeat scans and the cost that goes with them.

  3. Specialist diagnostic workup

    Procedure-specific tests — biopsy, cardiac catheterisation, endoscopy, or genetic / molecular profiling depending on the suspected diagnosis. Done at the centre that will treat, ideally, so results integrate cleanly into the treatment plan.

  4. Multidisciplinary review (where indicated)

    Cancer, complex cardiac, transplant, and rare-disease cases should be reviewed by a multidisciplinary panel — surgical, medical, imaging, and pathology — before any treatment commits. Single-discipline plans for complex disease are a quality red flag.

When to escalate urgently

  • Acute worsening of established symptoms — sudden chest pain, shortness of breath at rest, neurological deficit, severe bleeding, persistent high fever.
  • Loss of consciousness, severe persistent vomiting, or any focal neurological event.
  • Symptoms in the early hours of onset that fit a time-sensitive treatment window (stroke, MI, sepsis) — every hour costs outcome.
  • If you are travelling internationally for treatment and develop these symptoms in transit, divert to the nearest emergency department; do not wait to reach the planned destination.

Before you book international travel

  • Confirm your specific diagnosis is fully worked up before you commit to a treatment plan abroad. Travelling for the workup is fine; travelling for treatment without the workup done is not.
  • Get your case reviewed remotely by the destination centre's team before you book flights — credible international patient programs review imaging + reports before they confirm the surgical plan.
  • Bring a digital + physical copy of your full medical record: imaging on USB drive in DICOM format, labs in PDF, current medication list with dosages, allergies, and any prior surgical reports.
  • Plan for longer recovery + post-discharge therapy continuation before you fly — the surgery itself is rarely the bottleneck.
  • Confirm that follow-up imaging and any necessary in-person reviews can be done at home — a treatment plan that requires repeat international trips is more burdensome (and more expensive) than the headline procedure.
How this page is made

Methodology and editorial standards

This familial adenomatous polyposis (fap) overview is written by the editorial team from published Oncology sources and lists 1 treatment options offered by hospitals on our network. The page shows its last-updated date. Clinical descriptions are editorial — your treating clinician confirms what's right for your specific case.

  1. Hospital data. Hospital details are compiled from public sources and hospital websites. Accreditation (JCI, NABH and others) is shown where we hold a record of it. Always ask the hospital for its current certificate.
  2. Doctor credentials. Qualifications, specialty and bio come from the doctor's hospital profile. Licence is checked against the national medical-council register only where the profile shows a "Licence verified" badge with a date.
  3. Prices. Price ranges are indicative, compiled from hospital price lists and packages and shown with the date last updated. The hospital's written quote is what you pay against.
  4. Clinical text. Written by the Medcasts editorial team from published clinical sources. Unless a named reviewer is shown on the page, it has not been reviewed by a doctor.
  5. Independence. Hospitals cannot pay to change their position on our pages.
Data sources for this page
Peer-reviewed clinical guidelines (NCCN, ESMO, ESC, AHA, NICE — by indication)WHO ICD-11 condition classificationNational medical society treatment protocolsJCI accreditation registry

Next step · Familial Adenomatous Polyposis (FAP)

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