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Living with Familial colorectal cancer

A pattern of colon cancer in a family, sometimes caused by inherited gene changes.

Understanding Familial colorectal cancer

Familial colorectal cancer is a cluster of colon cancer within a family.

Most colon cancer occurs with little or no family history. About 3 to 5 percent is considered hereditary. In some families the gene change is not known. Another 10 to 30 percent of people have a strong family history but no known gene change, and shared genes and environment may play a role.

Signs & symptoms

GARD doesn't list specific symptoms for this condition yet.

Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.

Diagnosis

  1. Talk with your doctor

    Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.

  2. See a specialist

    Your doctor may refer you to a specialist who knows rare conditions.

  3. Ask which tests can help

    Your care team will decide which exams and tests can confirm the diagnosis.

  4. Connect 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
A doctor familiar with rare conditions, plus specialists as needed
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
Bring these questions to your next doctor visit
Should I have genetic testing for hereditary colon cancer?
When should I start colon cancer screening?
Should my family members have screening or genetic counseling?

Quick facts

Hereditary cases are caused by changes in genes such as APC, MYH, MLH1, MSH2, MSH6, PMS2, and others. In many families, the cause is not known.

Also known as: hereditary colorectal cancer

Patient organizations

Source: NIH GARD · Familial colorectal cancerGARD ID 8533 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

You are more than your diagnosis

Perspectives from people navigating life with Familial colorectal cancer.

Explore the Familial colorectal cancer blog

Explore research for Familial colorectal cancer

Explore actively recruiting Familial colorectal cancer studies with HealthSpark.

HealthSpark

Find actively recruiting studies for Familial colorectal cancer with HealthSpark. Share your city to explore research near you.

  • Recruiting studies from ClinicalTrials.gov
  • Share your city to look for research near you
  • Eligibility is confirmed by the study team

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I can help you find recruiting Familial colorectal cancer studies. Enter a ZIP code, address or city below and I'll look within 50 miles.

Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.

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