Medical Oncologist
CION Cancer Clinics
Checks for APC carriers, from childhood onwards | CION Cancer Clinics
An APC carrier needs regular camera checks of the bowel from late childhood, and later checks of the stomach, upper small bowel and thyroid. These checks find polyps early, while they can still be removed, and tell your team when surgery is the safer choice. This page sets out the usual pattern across a lifetime, the words on your report, and the symptoms that cannot wait. At CION Cancer Clinics, our oncologists explain what a gene result means for you and your family, and plan the checks that follow.
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Medically reviewed by Dr. Naresh GunduConsultant Medical Oncologist · MBBS, DNB (Internal Medicine), DM (Medical Oncology, AIIMS) · last reviewed September 2026, next review due September 2027
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On this page
- Which checks does an APC carrier need, and why?
- What do the checks look at?
- How do the checks change as a carrier grows older?
- What do the words on a surveillance report mean?
- What this page cannot tell you
- Four things carriers believe about surveillance, and what is true
- Common questions about checks for APC carriers
The short answer
Which checks does an APC carrier need, and why?
An APC carrier needs regular camera checks of the bowel from late childhood, then checks of the stomach, the first part of the small bowel and the thyroid as an adult. The aim is to find polyps and growths while they are small and before they turn into cancer. This is lifelong care, not a single test.
Why checks start so young
In classic FAP, polyps usually start to appear in the teenage years and grow in number over time. Left alone, one of them almost always becomes a cancer in early adult life. Regular colonoscopy tells your team when the polyps have reached the point where preventive surgery is the safer choice.
Why checks carry on after surgery
Removing the large bowel does not remove the APC fault. Polyps can still form in the part of the bowel that remains, in the stomach and in the small bowel just beyond it. The checks change after surgery, but they do not stop.
Your own schedule is set by your team from your polyp findings. This page explains the usual pattern, not your exact dates.What gets checked
What do the checks look at?
Four areas are watched in most carriers. How often each one is checked depends on what the last check found.
The large bowel
Colonoscopy counts and samples polyps. It starts in late childhood and is usually repeated every year or two. After surgery, the remaining rectum or the new pouch is checked instead.
The stomach and upper small bowel
A camera passed through the mouth looks at the stomach and the area where bile enters the gut. Polyps there are common in FAP, and this area carries the main cancer risk after bowel surgery.
This check needs a special side-viewing camera. Ask whether it will be used.The thyroid
An ultrasound of the neck looks for lumps in the thyroid gland. Thyroid cancer is more common in people with FAP, especially young women, and ultrasound is simple and painless.
Other checks, when advised
Some carriers need extra checks based on their family or their symptoms.
For example
- Scans for desmoids, if a relative had one
- Liver checks in some very young children
- A review of any new lump or symptom
Not sure whether this applies to you?
Ask an oncologist
!
Symptoms that cannot wait for your next check
Heavy bleeding from the back passage, black tarry stools with dizziness, or repeated vomiting with a swollen tummy and no stool or wind are emergencies. Go to the nearest emergency department the same day and say you have FAP. Do not wait for your next planned colonoscopy, and do not take painkillers to settle it first.
Across a lifetime
How do the checks change as a carrier grows older?
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Early childhood, in some families
A small number of families are offered blood tests and liver ultrasound for very young children, because a rare childhood liver tumour is more common with APC. Your counsellor will say whether this applies to you.
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Late childhood: the first colonoscopy
Bowel checks usually begin around the start of the teenage years, after the child has been tested for the family fault. Children who test negative do not need them.
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The teenage years: thyroid checks begin
Neck ultrasound is usually added from the late teens. It is quick, painless and can be done at the same visit as other checks.
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Early adulthood: the upper gut
A camera check of the stomach and upper small bowel is usually started in early adult life, or before bowel surgery. Findings are graded, and the grade sets how often it is repeated.
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After bowel surgery: lifelong follow-up
The remaining rectum or pouch is checked regularly, alongside the upper gut and thyroid. Missing these checks is the most common way problems are found late.
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On your report
What do the words on a surveillance report mean?
- Adenoma
- The kind of polyp that APC causes. It is not cancer, but it can become one if left in place for long enough.
- Polyp burden
- How many polyps there are and how large they are. It is the main thing that decides when surgery is advised.
- Duodenum
- The first part of the small bowel, just beyond the stomach. It is the main site checked by the upper gut camera.
- Spigelman stage
- A score for the polyps in the duodenum. A higher stage means more frequent checks and sometimes treatment.
- Ileal pouch
- A reservoir made from the small bowel after the large bowel and rectum are removed. It still needs camera checks.
- Dysplasia
- Cells that look abnormal under the microscope but are not yet cancer. High-grade dysplasia needs prompt action.
Being straight with you
What this page cannot tell you
It cannot give you your own dates. Surveillance in FAP is set from the last set of findings, so two carriers in the same family can have very different schedules. What your specific variant means is a question for the counsellor who ordered the test.
It cannot tell you when surgery is due
The move from watching to surgery depends on the number, size and appearance of polyps, and on your age, work, studies and family plans. That is a decision made with your gastroenterologist and surgeon over several visits.
Who this does not apply to
This schedule is for people with an APC fault that causes FAP. It does not apply to relatives who tested negative for the family fault, who follow ordinary screening for their age. It also does not apply to carriers of the low-risk I1307K change, or to people with attenuated FAP, whose checks are usually less frequent and start later.
If you live in a district and travel for checks, ask whether some visits can be combined on the same day.Commonly believed
Four things carriers believe about surveillance, and what is true
"I feel well, so I can skip this year's check."
Polyps and early cancers in FAP usually cause no symptoms at all. Feeling well is exactly when checks do their job. By the time symptoms appear, the chance to prevent cancer may have passed.
"After my bowel was removed, I am free of FAP."
The fault remains in every cell. The upper gut, thyroid and remaining bowel still need regular checks for life. Surgery changes the schedule. It does not end it.
"A stool test or a scan can replace colonoscopy."
Stool tests and scans miss small polyps and cannot remove or sample them. In FAP, the camera check is the test that guides surgery and cannot be swapped for something simpler.
"My child is too young to worry about this."
Polyps in classic FAP often start in the teenage years. Testing and planning in late childhood gives the family time to prepare, rather than finding polyps in a hurry later.
Questions we are asked
Common questions about checks for APC carriers
How often will I need a colonoscopy?
In classic FAP, bowel checks are usually repeated every year or two before surgery, and more often if polyps are growing quickly. After surgery the remaining rectum or pouch is still checked regularly. Your gastroenterologist sets the interval from what the last check found.
Is colonoscopy painful for a teenager?
Children and teenagers are usually given sedation or a short anaesthetic, so most remember little of it. The bowel preparation the day before is often the hardest part. Ask the team about ways to make the preparation easier to manage.
Why do I need a camera check of my stomach?
Polyps in the stomach and the first part of the small bowel are very common in FAP. After the large bowel is removed, this area carries the main remaining cancer risk. Regular checks find changes early, when they can be removed through the camera.
Can all my checks be done on one day?
Often, yes. Upper and lower camera checks can be done under the same sedation, and a thyroid ultrasound can be added the same day. For families travelling from a district, ask for combined appointments when booking.
What happens if a check finds something?
Most findings are polyps that are removed or sampled during the same check. Some findings bring the next check forward. A larger change, such as many large polyps, leads to a discussion about surgery. You will be told what was found before you go home.
Do relatives who tested negative need these checks?
No. If the family's APC fault is known and a relative tested negative for it, they have the same bowel risk as anyone else. They follow ordinary screening for their age, without the extra FAP checks.
Are these checks covered by insurance or Aarogyasri?
Some policies and schemes cover camera checks and scans, especially once a diagnosis is recorded. Cover varies between policies. Ask for a written estimate before each round of checks and confirm it against your own policy or scheme card.
I missed a check. What should I do now?
Book the next available appointment rather than waiting for the following year. Tell the team how long it has been since your last check. A single late check is usually easy to recover from. Repeatedly missing checks is what causes harm.
Your Specialists
Meet CION's oncologists. Bring your family history or genetic report to them.
Our medical oncologists see people with a strong family history of cancer, arrange genetic counselling and testing where it fits, and plan the checks that follow.
Medical Oncologist
Dr. C. Raghavendra Reddy
MBBS(Gold Medal), DNB(General Medicine), DM(Medical Oncology)(Gold Medal)
Medical Oncologist
Dr. Bharati Devi Gorantla
MBBS, MD(General Medicine), DM(Medical Oncology)(Adyar,Chennai), ECMO, MRCP SCE(UK)
Medical Oncologist
Dr. Owais Mohammed
MBBS, MD (General Medicine), DrNB (Medical Oncology), ECMO, MRCP SCE (Medical Oncology) (UK)
Medical Oncologist
Medical Oncologist
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Sources
- GeneReviews (NCBI) — APC-Associated Polyposis Conditions
- National Cancer Institute — Genetics of Colorectal Cancer (PDQ)
- NCCN — NCCN Guidelines: Detection, Prevention and Risk Reduction
- MedlinePlus Genetics — Familial adenomatous polyposis
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.
Keep reading
Related pages
When screening should start in an FAP familyThe first colonoscopy, and how to prepare a child for itUpper GI surveillance and duodenal polyps in FAPThe check that matters most after bowel surgeryThyroid screening in FAPWhy the neck is checked, and how oftenAPC positive: what happens nextThe first months after a positive result
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