Risk management for people with inherited CDKN2A mutations
The following are risk management guidelines for people with CDKN2A mutations. We also recommend that you speak with a genetics expert who can look at your personal and family history of cancer and can help you determine the best risk management plan. You can learn more about risk management options in our section on Screening and Risk Reduction by Cancer Type.
Melanoma screening and prevention
- Perform monthly self-exams to look for skin changes. Have a friend or family member help with hard to see areas of the body.
- Watch moles closely for any signs of change in shape, size, or color.
- Twice yearly exam should include mole mapping, or full body photography. They may also view moles with a hand-held device known as a dermatoscope. Any suspicious moles or other skin changes should be removed by a doctor so the tissue can be analyzed under a microscope.
- Due to the high risk of multiple melanomas, people with familial melanoma and/or CDKN2A gene mutations should practice sun safety and take steps to protect themselves when outdoors. This can include avoiding being outside during the peak sun exposure hours between 10:00 AM and 4:00 , seeking shade when available, using sunscreen frequently and liberally, wearing a hat with a brim at least 3 inches wide that extends all the way around the head, and wearing protective clothing that includes coverage of the arms and legs.
- Children in families that have familial melanoma and/or CDKN2A gene mutations should begin screening by age 10.
- In people that have had melanoma, thorough skin exams should be performed every 3 to 6 months by a depending on several factors, including number of moles, time since diagnosis, skin type and melanoma type.
Pancreatic cancer screening and prevention
- Consider pancreatic cancer screening, beginning at age 40 (or 10 years younger than the earliest case of pancreatic cancer in the family), using one or both of the following:
- contrast-enhanced MRI/magnetic resonance cholangiopancreatography (MRI/MRCP)
- endoscopic (EUS)
- Before undergoing screening, people should have a conversation with their doctor about the potential benefits, risks, costs and limitations of screening.
- NCCN recommends that the screening be performed in an experienced facility.
Get Support
FORCE offers many peer support programs for people with inherited mutations.
- Our Message Boards allow people to connect with others who share their situation. Once registered, you can post on the Diagnosed With Cancer board to connect with other people who have been diagnosed.
- Our Peer Navigation Program will match you with a volunteer who shares your mutation and situation.
- Our moderated, private Facebook group allows you to connect with other community members 24/7.
- Check out our virtual and in-person support meeting calendar.
- Join one of our Zoom community group meetings.
updated: 08/06/2022
Related Resources
Organizations that provide information and resources for people diagnosed with melanoma include:
- AIM at Melanoma is a nonprofit organization that has online support and in-person support groups by region and a lookup tool for finding a melanoma expert by location.
Organizations that provide support and resources for people diagnosed with pancreatic cancer include:
- PanCAN is a nonprofit organization for people diagnosed with pancreatic cancer.
- Let's Win PC is a nonprofit organization that enables doctors, scientists, and patients to share fast-breaking information on potentially life-saving pancreatic cancer treatments and clinical trials.
updated: 03/13/2022
Paying For Care
Health plan coverage of screening and prevention varies, and deductibles, coinsurance and copays often apply. If you need preventive services and your insurance company denies your claim, your health care provider can help you write an appeal letter, or you can use one of our sample appeal letters. If you need information about finding an insurance plan, watch our video: Choosing Wisely: How to Pick Insurance Plans.
Visit our section on Insurance and Paying for Care: Screening and Prevention for more information.
updated: 11/15/2022
Open Clinical Trials
The following are studies looking at risk management for pancreatic cancer:
- 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. Magnetic Resonance Imaging and Magnetic cholangiopancreatography (MRI/MRCP) will be utilized to screen for pancreatic cancer or precursor lesions.
- NCT02478892: Preliminary Evaluation of Screening for Pancreatic Cancer in Patients With Inherited Genetic Risk. The study is a , observational study evaluating the utility of endoscopic or for the identification of preneoplastic and neoplastic pancreatic lesions in patients at high risk for pancreatic cancer, specifically those with BRCA1/2, or mutations.
- NCT03568630: Blood Markers of Early Pancreas Cancer. Identifying biomarkers of early pancreatic ductal () could facilitate screening for individuals at higher-than-average risk, expedite the diagnosis in individuals with symptoms and substantially improve an individual's chance of surviving the disease.
- NCT02206360: Pancreatic Cancer Early Detection Program (PCEDP). This is a study looking at esophageal as a screening for pancreatic cancer in high risk individuals.
- NCT03250078: A Pancreatic Cancer Screening Study in Hereditary High Risk Individuals. The goal is to screen for pancreatic cancer in individuals with a strong family history or genetic risk using Magnetic Resonance Imaging and Magnetic cholangiopancreatography (MRI/MRCP).
A number of other clinical trials for pancreatic cancer screening and prevention may be found here.
updated: 06/18/2022
Open Clinical Trials
- NCT03250078: Pancreatic Cancer Screening Study for High Risk People. The purpose of this study is to screen and detect pancreatic cancer and precancer in people with a strong family history of pancreatic cancer, or people with an and at least one first- or second-degree relative with pancreatic cancer. This includes people with a CDKN2A .
- NCT02206360: Pancreatic Cancer Early Detection. This is a study looking at esophageal as a screening for pancreatic cancer in high risk individuals. The study will enroll people with an inherited risk for cancer due to a or CDKN2A mutation.
updated: 05/29/2023