Hereditary Cancer and Genetic Testing

Medical decisions for people with inherited CDH1 mutations who have been diagnosed with cancer

Currently there are no cancer treatments approved specifically for people with a CDH1 mutation, nor guidelines for treating cancer specifically for people with a CDH1 mutation. To learn more about standard of care treatment options for specific types of cancer, visit our section on Cancer Treatment by Cancer Type


Surgical decisions for women diagnosed with breast cancer

Because of the risk for a second breast cancer diagnosis, women who are diagnosed with breast cancer who test positive for an inherited mutation in CDH1 may choose bilateral mastectomy rather than lumpectomy and radiation. Mutation carriers who undergo mastectomy are less likely to develop a second breast cancer. 

find-support

If you have an CDH1 mutation and have been diagnosed with cancer, you can find peer support through the following resources:

You can also find support through this organization:

  • No Stomach for Cancer is a nonprofit with a mission to support research and unite the caring power of people worldwide affected by stomach cancer.
paying-for-service

The majority of public and private health insurance plans are required to cover cancer diagnosis and treatment; copays, coinsurance and deductibles often apply. Patient costs and coverage for specific doctors, facilities or treatments may vary based on your health plan. If 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. Visit our section on Insurance and Paying for Care: Treatment for more information.

Last updated September 02, 2021