Get notified of page updates

EPCAM: Cancer Risks

People with Lynch syndrome due to an EPCAM gene mutation have an increased risk for several types of cancer. Learn about these cancer risks. Stay up to date by signing up for our community newsletter.

Glossary on

off

Cancer Risks Associated with Inherited Mutations

Experts separate mutations and their cancer risks into two groups:

Mutations that involve the nearby gene
Mutations that do not involve the gene

If you or a relative have tested positive for an mutation, we recommend speaking with a genetics expert. They can look at your specific mutation and your personal and family medical history to help you understand your risk.

Experts at the National Comprehensive Cancer Network (NCCN) created guidelines which estimate the cancer risks for people with each type of mutation. These cancer risk estimates are updated based on the latest research. The current risk estimates are listed below.

It is important to note that cancer risks are estimates over the course of a person's lifetime. Your lifetime risk and risk over the next five years will vary depending on your:

current age.
sex assigned at birth.
specific type and location of mutation on the gene.
personal and family health history.
diet, exercise, lifestyle and other factors.
prior cancer treatments.

Cancer risks for people with an mutation that involves MSH2

People with an mutation that involves the gene have similar cancer risks as people with mutations. These mutations increase the risk for colorectal, endometrial and other types of cancer listed in the table below.

Cancer Type	Lifetime Risk with an Mutation that Involves	Lifetime Risk for General Population	Average Age of Onset with	Average Age of Onset in General Population
Colorectal	33 - 52%	4%	44 years	68 - 72 years
Endometrial	21-57%	3.1%	47-48 years	60 years
Ovarian	8-38%	1.1%	43 years	63 years
Kidney/ureter	2.2 - 28%	1.8%	54 - 61 years	Not specified
Bladder	4.4 - 12.8%	2.2%	59	73 years
Gastric	0.2 - 9%	0.8%	52 years	68 years
Small bowel	1.1 - 10%	0.3%	48 years	60s - 70s
Pancreatic	2 - 5%	1.7%	Unknown	66 years
	Up to 24%	12.8%	59 - 63 years	66 years
Brain	2.5 - 7.7%	0.6%	No data	59 years
Biliary tract	Up to 1.7%	Unknown	57 years	No data
Sarcoma	Up to 4.2%	0.1%	62-63 years	No data
Source: NCCN Guidelines: Genetic/Familiar High-Risk Assessment: Colorectal, Endometrial, Esophageal, and Gastric; v.1 2026; NCCN Guidelines: Genetic/Familial High-Risk Assessment: Breast, Ovarian, Pancreatic, and Prostate; v.1 2027.

Other cancers

People with an inherited mutation that involves may have an increased risk for other cancers. The exact risks for the following cancers are unknown:

sebaceous skin growths
female breast cancer

Research on how inherited mutations in the gene affect cancer risk is ongoing.

Share Your Test Results with Relatives ›

Download our sample letter to help you share your EPCAM test results with relatives.

Topic : Gastrointestinal cancer survivorship in younger adults includes challenges often overlooked

Study : Early trial of new vaccine shows promise for people with Lynch syndrome

Study : Cancer patients with certain inherited mutations have cancer outcomes similar to those without inherited mutations

Study : Cancer may occur at earlier ages in later generations of families with Lynch syndrome

Cancer risks for people with an mutation that does not involve MSH2

People with an mutation that does not involve the gene have different cancer risks. See the chart below for the cancer risks associated with these mutations.

Cancer Type	Lifetime Risk with an Mutation that Does Not Involve	Lifetime Risk for General Population	Average Age of Onset with	Average Age of Onset in General Population
Colorectal	75%	4%	43 years	68 - 72 years
Endometrial	12-25%	3.1%	49 years	60 years
Source: NCCN Guidelines: Genetic/Familiar High-Risk Assessment: Colorectal, Endometrial, Esophageal, and Gastric; v.1 2026.

Other cancers

People with an inherited mutation that does not involve the gene may also have an increased risk for other types of cancer. However, these mutations are very rare, and there has been limited research on their cancer risks beyond colorectal and .

Because so little is known, it is unclear whether these mutations increase the risk for cancers such as gastric, bile duct, pancreatic, kidney, ureter, bladder, , brain cancers or sarcomas.

The NCCN recommends that decisions about cancer screening be based on a person's age, family history, personal risk factors, and discussions with their care team. In some cases, doctors may use information from other syndromes to help guide recommendations when data for specific mutations are not available.

More Resources

Find Compassionate Support

Making treatment decisions may feel overwhelming or isolating. You don't have to face this alone. Find support from people who have been there and understand.

Learn More