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Hereditary Cancer and Genetic Testing

Cancer risk associated with inherited  mutations

If you have tested positive for an  mutation, we recommend speaking with a genetics expert who can look at your personal and family history of cancer, and can help you decide on the best risk management plan.

cancer risks include the following:

Risk for cancer in people with an mutation. Source: NCCN: Genetic/Familiar High-Risk Assessment: Colorectal Version 1.2022
Cancer type Lifetime risk with for people with mutation Lifetime risk for people in general population Average age of diagnosis for people with mutation Average age of diagnosis for people in the general population
Colorectal 46 - 61% 4.2% 44 years 68 - 72 years
Endometrial 34 - 54% 3.1% 49 years 60 years
Ovarian 4 - 20% 1.3% 46 years 63 years
Kidney/ureter 0.2 - 5% 1.2% 59 - 60 years Not specified
May be elevated 11.6 63 years 66 years
Bladder 2 - 7% 2.4% 59 years 73 years
Gastric  5 - 7% 0.9% 52 years 68 years
Small bowel .4 - 11% 0.3% 47 years 60s - 70s
Brain .7 - 1.7% 0.6% No data 59 years
Biliary tract 1.9 - 3.7% 0.2% 50 years 70 - 72 years
Pancreatic 6.2% 1.6% No data 71

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

  • sebaceous skin growths
  • cancer
  • breast cancer 

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

Graph of lifetime risk for colorectal cancer in people with <button
                x-data
                class='glossary-tip tt-mlh1'
                x-tooltip='<p>MLH1&nbsp;is a gene found on chromosome 3.&nbsp;Mutations in MLH1 are associated with Lynch Syndrome. People with Lynch Syndrome have an&nbsp;increased the risk for&nbsp;colon, uterine, ovarian, pancreatic and other cancers.&nbsp;</p>

<p>Also see Lynch Syndrome.&nbsp;</p>
'
            >MLH1</button> mutations     Graph of lifetime risk for endometrial cancer in women with an <button
                x-data
                class='glossary-tip tt-mlh1'
                x-tooltip='<p>MLH1&nbsp;is a gene found on chromosome 3.&nbsp;Mutations in MLH1 are associated with Lynch Syndrome. People with Lynch Syndrome have an&nbsp;increased the risk for&nbsp;colon, uterine, ovarian, pancreatic and other cancers.&nbsp;</p>

<p>Also see Lynch Syndrome.&nbsp;</p>
'
            >MLH1</button> mutation     

Graph of lifetime risk for ovarian cancer in women with <button
                x-data
                class='glossary-tip tt-mlh1'
                x-tooltip='<p>MLH1&nbsp;is a gene found on chromosome 3.&nbsp;Mutations in MLH1 are associated with Lynch Syndrome. People with Lynch Syndrome have an&nbsp;increased the risk for&nbsp;colon, uterine, ovarian, pancreatic and other cancers.&nbsp;</p>

<p>Also see Lynch Syndrome.&nbsp;</p>
'
            >MLH1</button> mutations     Graph of lifetime risk for pancreatic cancer for person with an <button
                x-data
                class='glossary-tip tt-mlh1'
                x-tooltip='<p>MLH1&nbsp;is a gene found on chromosome 3.&nbsp;Mutations in MLH1 are associated with Lynch Syndrome. People with Lynch Syndrome have an&nbsp;increased the risk for&nbsp;colon, uterine, ovarian, pancreatic and other cancers.&nbsp;</p>

<p>Also see Lynch Syndrome.&nbsp;</p>
'
            >MLH1</button> mutation

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:

  • current age
  • gender assigned at birth
  • specific mutation
  • personal and family health history
  • diet, exercise, lifestyle and other factors
Last updated July 02, 2022

Get Support
Get Support

FORCE offers many peer support programs for people with inherited mutations. 

updated: 08/06/2022

Open Clinical Trials
Open Clinical Trials

The following screening and prevention studies are open to people with

Colorectal cancer

Gynecologic cancers

 cancer

  • NCT03805919: Men at High Genetic Risk for  Cancer. This is a  cancer screening study using  in high risk men. This study is open to men with  and other mutations.
  • NCT05129605: Cancer Genetic Risk Evaluation and Screening Study (PROGRESS).  This study will look at how well  MRI works as a screening tool for men at high risk for cancer. This study is open to men with inherited mutations in , , , , , , HOXB13, , , , , , , , , and other genes. 

Pancreatic cancer

  • NCT02206360: Pancreatic Cancer Early Detection Program. This pancreatic cancer screening study uses esopheal  to screen for pancreatic cancer in high risk people. The study is open to people with a  mutation or other mutation linked to increased cancer risk who also have a family history of pancreatic cancer.
  • NCT03568630: Blood Markers of Early Pancreas Cancer.  This pancreatic cancer study involves blood samples over time to look for biomarkers of pancreatic cancer in high risk people. The study is open to people with an  mutation or other mutation linked to increased cancer risk.
  • NCT03250078: A Pancreatic Cancer Screening Study in Hereditary High Risk Individuals. The main goal of this study is to screen and detect pancreatic cancer and precursor lesions in individuals with a strong family history or genetic predisposition to pancreatic cancer.  and Magnetic cholangiopancreatography (MRI/MRCP) will be utilized to screen for early  pancreatic lesions.

A number of other clinical trials for patients with endometrial cancer can be found here.

updated: 09/19/2022