Living with Muir-Torré syndrome
A form of Lynch syndrome with oil gland skin tumors and a higher chance of internal cancers, mainly in the digestive tract.
Understanding Muir-Torré syndrome
The most common internal site is the digestive tract, with almost half of people having colorectal cancer, followed by the urinary and reproductive tract. Skin tumors may appear before or after the internal cancer. A genetic change gives a person a higher lifetime risk of the skin changes and cancers linked with the condition.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Oil gland (sebaceous) skin tumors
- Colon cancer
- Ovarian tumors
- Basal cell skin cancer
- Breast cancer
- Other tumors of the digestive and urinary tracts
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
Your doctor may refer you to a specialist who knows rare conditions.
- 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 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
- 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
This condition is caused by changes in the MLH1 or MSH2 genes. It is autosomal dominant, which means a changed copy of the gene from one parent can be enough to cause it.
Also known as: cutaneous sebaceous neoplasms and keratoacanthomas multiple with gastrointestinal and other carcinomas; mlh1-related muir-torre syndrome; mrtes; msh2-related muir-torre syndrome; muir-torre syndrome; multiple keratoacanthoma, muir-torre type
Patient organizations
- Fight Colorectal CancerMuir-Torré syndrome · United States
- American Cancer SocietyMuir-Torré syndrome · United States
- Colon Cancer AllianceMuir-Torré syndrome · United States
- Lynch Syndrome InternationalMuir-Torré syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Muir-Torré syndrome.
Explore research for Muir-Torré syndrome
Explore actively recruiting Muir-Torré syndrome studies with HealthSpark.
Find actively recruiting studies for Muir-Torré syndrome 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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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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