FORCE: Facing Our Risk of Cancer Empowered


People with cancer often wonder what caused the disease. Relatives of people with cancer often are concerned that they may be at increased risk for getting cancer too. Inherited gene changes can cause cancer to run in families. This brochure can help you learn if your cancer or the cancer in your family could be caused by an inherited gene change and what you can do about it.
 
FORCE is the only national nonprofit organization devoted to individuals and families affected by hereditary breast, ovarian, and related cancers. By providing research, support, education, and awareness specific to hereditary cancer and those affected by it, we ensure that no one travels this journey alone.
 
 

What causes hereditary cancer?

What is HBOC?

Hereditary cancers occur because of an inherited change called a mutation in certain genes that normally protect the body from developing cancer. This change increases a person’s risk for one or more types of cancer and can be passed from generation to generation. BRCA1 and BRCA2 are the names of the two most common genes associated with hereditary breast and ovarian cancer (HBOC). Women with mutations in one of these genes have an elevated risk for breast, ovarian, and other cancers. Men with a BRCA mutation have an increased chance of developing breast and prostate cancers. Men and women with a BRCA gene mutation also have a slightly higher lifetime risk for pancreatic cancer and melanoma. Mutations in other genes, such as those that cause Lynch syndrome and Cowden syndrome, and mutations in genes such as PALB2 can also increase risk of breast and/or ovarian cancers, and in some cases, other cancers too. Medical experts called genetic counselors can help you understand your cancer risk and make recommendations to help you stay healthy.
 
 

Warning Signs of Hereditary Breast and Ovarian Cancer

You or any family member has had:
• ovarian or fallopian tube cancer at any age
• breast cancer at age 50 or younger
• more than one breast cancer diagnosis
• both breast and ovarian cancer
• triple negative breast cancer
• Eastern European (Ashkenazi) Jewish ancestry and a history of breast or ovarian cancer
• male breast cancer
 
More than one family member on the same side of the family has had any of these cancers:
• breast cancer
• ovarian or fallopian tube cancer
• prostate cancer
• pancreatic cancer
 
Other hereditary cancers, such as those associated with Lynch and Cowden syndromes have additional warning signs.
 
FORCE: Facing Our Risk of Cancer Empowered
16057 Tampa Palms Blvd. W, PMB #373
Tampa, FL 33647
 
Toll-free Helpline: 866-288-RISK (7475) 
Fax: 954-827-2200 
Email: info@facingourrisk.org

How can I learn if I have an inherited mutation?

 
There are blood or saliva laboratory tests that can tell if you have an inherited mutation. Most people do not inherit cancer-causing gene mutations, so genetic testing is not recommended for everyone. Medical experts known as genetic counselors can provide you and your family with information about genetic testing, cancer risk, and medical options to help you stay healthy.
 
A genetic counselor will:
• help you to understand hereditary cancer
• review your family medical history to assess and explain your risk for cancer
• describe the benefits and limitations of genetic testing, and discuss whether it is right for you
• order the appropriate test if you choose to proceed with genetic testing
• interpret and explain what genetic test results mean for you and your family
• discuss how to manage your cancer risk, and refer you to experts for follow-up care
 
There are many different types of genetic tests so it’s important to speak with a genetic counselor before genetic testing. Test results may affect your health care decisions, so it’s equally important to speak with a genetics expert after testing. Your test results may also make you eligible to participate in clinical trials of new therapies. Sharing your test results with relatives can increase their access to genetic testing and medical services, helping them learn more about their own cancer risk and how they might reduce it.
 

You should consider genetic counseling if…

You were diagnosed with ovarian,fallopian tube, or primary peritoneal cancer.

Women of any age diagnosed with these cancers meet national guidelines for genetic counseling and genetic testing.
 

You were diagnosed with breast cancer in both breasts, breast cancer before age 50, or triple negative (ER-/PR-/Her2-) breast cancer.

Having a diagnosis of any of the above types of breast cancer increases the likelihood that you have an inherited mutation.
 

You are a man who has been diagnosed with breast cancer.

Male breast cancers are rare, and are often linked to inherited mutations in genes that increase cancer risk. 
 

Your family has had multiple cancers.

Multiple relatives on the same side of the family with cancers such as breast, ovarian, pancreatic, prostate, and/or melanoma may signal an inherited family mutation.
 

You are Jewish.

One in every 40 people of Eastern European (Ashkenazi) Jewish ancestry carries a BRCA mutation. If you are Jewish, and you or a close relative has had breast, ovarian, pancreatic, melanoma or prostate cancers, a genetics expert can help you decide if genetic testing is right for you.
 

One or more relatives tested positive for a mutation in a BRCA or other gene that is associated with increased cancer risk.

The more closely related you are to a blood relative who tests positive for a gene mutation, the greater your chance of having the same mutation.

What happens after genetic testing?

Test results

There are several types of genetic tests, and interpretation of the results depends on which test was ordered. Your blood relatives may have the same mutation and may also have a high risk for cancer so it is important to share information about your genetic counseling and testing result.
 
A positive BRCA test means that your risk for breast and ovarian cancers is very high, and your risk for prostate and pancreatic cancers, as well as melanoma also is increased. A positive result for other mutations such as PALB2, PTEN, and the genes that cause Lynch syndrome is associated with different cancer risks.
 
Negative genetic test results do not always provide clear information on cancer risk, which is one reason that genetic counseling before and after genetic testing is so important. If you test negative for a mutation, your risk for cancer will vary depending on several factors including family history of cancer.
 

You have options for managing your cancer risk

There are three medical options to manage cancer risk: surveillance (screening), chemoprevention (medication to lower risk for cancer), and risk-reducing surgery to remove healthy organs that are most likely to develop cancer. These strategies are not equally effective for all cancers, and each option carries benefits and risks. Your choice may differ from someone else’s, and your approach to managing risk may change over time. Your health care team can help you develop a long-term risk management plan that is right for you. Visit facingourrisk.org/options for more information about options for managing risk.
 

Insurance, privacy, and discrimination

Does insurance cover genetic counseling and genetic testing?

The Affordable Care Act (ACA) requires that private health insurance cover the cost of genetic counseling and BRCA genetic testing without co-payment or deductible for individuals without cancer who meet specific guidelines. A genetic counselor can help determine whether you qualify for genetic testing under your health insurance.
 

Will you lose your health insurance if you test positive for a gene mutation?

The Genetic Information Nondiscrimination Act (GINA) prohibits health insurance companies and employers from discriminating based on an individual’s genetic information. GINA does not apply to life, disability, or long-term care
insurance.