Living with Familial multiple polyposis syndrome
An inherited condition (familial adenomatous polyposis) with many growths in the colon that raise the risk of colorectal cancer.
Understanding Familial multiple polyposis syndrome
Polyps are growths that are not yet cancer, but they can turn into colorectal cancer. There is a classic type, which starts as early as childhood, and a milder (attenuated) type. People with FAP can also have growths in other places, such as bones (osteomas), skin (cysts), and the adrenal glands. Less often, other types of cancer can occur.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Many colon and rectal polyps
- Polyps in the stomach and the first part of the small intestine
- Constipation or diarrhea
- Bone growths (osteomas)
- Thyroid nodules
- Tissue growths called desmoid tumors
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include cancer specialists, digestive system specialists, eye disease specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Fight Colorectal Cancer and FORCE: Facing Our Risk of Cancer Empowered may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Digestive system specialists (gastroenterologists); Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Fight Colorectal Cancer, FORCE: Facing Our Risk of Cancer Empowered
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Fight Colorectal Cancer and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Changes in genes cause FAP. GARD says it can be passed down in an autosomal dominant or autosomal recessive way.
Also known as: adenomatous polyposis; adenomatous polyposis coli; adenomatous polyposis of the colon; apc - adenomatous polyposis coli; classic familial adenomatous polyposis; classic fap
Patient organizations
- Fight Colorectal CancerFamilial multiple polyposis syndrome · United States
- FORCE: Facing Our Risk of Cancer EmpoweredFamilial multiple polyposis syndrome · United States
- American Cancer SocietyFamilial multiple polyposis syndrome · United States
- Cancer Hope NetworkFamilial multiple polyposis syndrome · United States
- Colon Cancer AllianceFamilial multiple polyposis syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial multiple polyposis syndrome.
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