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LYNCH SYNDROME

(METASTATIC COLORECTAL CANCER)
Lynch Syndrome

WHAT YOU NEED TO KNOW:

What is Lynch syndrome? Lynch syndrome is a genetic disorder that increases your risk for certain cancers. Lynch syndrome type 1 increases your risk for colorectal cancer. Type 2 increases your risk for stomach, gallbladder duct, liver, upper urinary tract, skin, and brain cancer. Women with type 2 Lynch syndrome are also at increased risk for ovarian or endometrial cancer.

How is Lynch syndrome diagnosed? Your healthcare provider may suspect you have Lynch syndrome if other members of your family have colorectal cancer. He may suspect it if you develop colon or rectal cancer at an early age or often get polyps. A blood test is used to confirm Lynch syndrome. Tell your healthcare provider if you have ever had cancer, and what type you had. Tell him if anyone in your family had cancer and when it was first diagnosed. He will also need to know if anyone in your family has Lynch syndrome.

What treatment may I need? Lynch syndrome cannot be treated or cured. You may need treatment such as chemotherapy or radiation if you develop cancer. Treatment will depend on the kind of cancer you have. It will also depend on how advanced the cancer is and where it is located. Surgery is often used to treat colorectal cancer. Part of your colon, rectum, or lymph nodes may be removed to help stop the cancer from spreading. You may need to have more of your colon removed than is usually done to treat colorectal cancer.

What can I do to manage Lynch syndrome and prevent cancer?

  • Get tested for cancer as often as directed. You may need to start around age 20 for some types of cancer testing. You may need to be tested every 1 to 2 years. Colonoscopy is a test used to check for signs of colorectal cancer. You may also need to be tested for other types of cancer if you have type 2 Lynch syndrome. Your healthcare provider will tell you which tests you need and how often to be tested.

  • Tell family members about Lynch syndrome. They might need to be tested for cancer or for Lynch syndrome. A genetic counselor can talk to you about your risk for passing Lynch syndrome to your children.

  • Do not smoke. Nicotine can damage blood vessels and make it more difficult to manage cancer. Smoking also increases your risk for new or returning cancer and delays healing after treatment. E-cigarettes or smokeless tobacco still contain nicotine. Ask your healthcare provider for information before you use these products.

  • Eat a variety of healthy foods. Healthy foods include fruits, vegetables, low-fat dairy products, lean meats, fish, and legumes, such as cooked beans. Healthy foods can help reduce your risk for some types of cancer. Fruits and vegetables can be especially helpful in preventing colorectal cancer.

  • Exercise as directed. Exercise can help lower your risk for cancer. Ask your healthcare provider how much exercise you need and which exercises are best for you.

  • Take aspirin if directed. Aspirin can help reduce your risk for colorectal cancer. Talk to your healthcare provider before you start taking aspirin every day. Aspirin is a blood thinner and may cause severe bleeding if you are taking blood thinners. Your risk for stomach bleeding is also increased. Your healthcare provider will tell you how much aspirin to take and how often to take it.

When should I contact my healthcare provider?

  • You have new or worsening symptoms, such as weight loss, bleeding from your rectum, or fatigue.

  • You have questions or concerns about your condition or care.

CARE AGREEMENT:

You have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your caregivers to decide what care you want to receive. You always have the right to refuse treatment.