Hereditary Cancer Assessment

Many people worry about being diagnosed with cancer, especially if close relatives have had cancer. Although most cancers are not hereditary, in some families a predisposition to cancer can be passed down from one generation to the next – from either parent.

Determining if the cancer in your family is sporadic, familial or hereditary can provide you with the information you need to create a plan for early detection and/or reducing the risk of developing cancer. A better understanding of your cancer risk can also provide peace of mind.

A complete hereditary cancer assessment includes counseling from one of Hoag’s certified genetic counselors, in addition to genetic testing.

What is genetic testing?

Genetic testing for hereditary cancer susceptibility usually involves just a simple blood draw or saliva sample. All tests are performed at outside laboratories. The results of these tests can help determine if you are at risk for hereditary cancers.

When it is suspected that an individual may have a hereditary risk for breast or ovarian cancer, BRCA testing is performed. BRCA testing is done to test for a mutation in the BRCA1 or BRCA2 (BReastCAncer) genes, which can cause Hereditary Breast and Ovarian Cancer (HBOC) Syndrome. This syndrome substantially increases the risk for developing breast and ovarian cancer. Depending on the cancer history in the family, we might also discuss testing for other breast cancer genes.

For individuals or families with other types of cancer, for example of the colon, uterus, stomach, kidney, pancreas or brain, we will order DNA testing for the appropriate genes pertaining to those cancers.

Organizations such as American Cancer Society, National Cancer Institute, American Society of Clinical Oncology and the U.S. Preventive Services Task Force recommend that genetic testing be done only after consultation with a genetics professional.

A genetic counselor can help you decide if testing is indicated, which test is appropriate and the best approach for testing in your family. Genetic test results are often complex, and should therefore be interpreted by a specialist who can also provide emotional support, assistance in informing family members, and help in developing a plan for cancer screening and risk reduction.

Who should consider hereditary cancer assessment?

If you or a close family member have had any of the following, a hereditary cancer assessment may be important for you:

Hereditary Breast/Ovarian Cancer

Breast cancer under age 40-50
Ovarian cancer at any age
Breast and ovarian cancer in an individual or family
Male breast cancer
Breast, ovarian or pancreatic cancer in an Ashkenazi (Eastern European ancestry) Jewish family
Metastatic prostate cancer

Learn more about Hereditary Breast Cancer genetic counseling at the Hoag Breast Center site.

Hereditary Colon Cancer

Colorectal cancer under age 50
Endometrial (uterine) cancer under age 50
Multiple colon polyps
More than one of the following cancers in an individual or family, especially under age 50: colon, rectal, endometrial, gastric, ovarian, pancreas, ureter/renal pelvis, biliary tract, small bowel, brain, and sebaceous adenoma/carcinoma.

Other Hereditary Cancer Conditions

Multiple family members with the same type of cancer (for example, stomach, pancreatic, kidney, melanoma, brain, bladder and prostate)
Younger than average age at diagnosis (for example, stomach cancer at age 45)
Individuals with more than one type of primary cancer (e.g. cancer in both kidneys), especially if the first diagnosis was under age 50
Anyone with paraganglioma, medullary thyroid cancer, adrenocortical carcinoma, pheochromocytoma, retinoblastoma or Wilms tumor
Metastatic prostate cancer

What is involved in an assessment?

Family History form and Helpful hints for completing the Family History form

What will happen at the appointment?

Please allow approximately one hour for your initial meeting with the genetic counselor. If testing is performed, then it may take another 15-20 minutes for sample collection – either blood or saliva. At the time of your appointment, you will check in at the front desk at either the Patty & George Hoag Cancer Center or Hoag Cancer Center Irvine. After your registration is complete, a genetic counselor will meet with you to review your personal and family history.

The genetic counselor is here to:

Listen: What are your concerns?
Provide education: Explain the complexities of hereditary cancer, risks, genetic testing and implications of test results
Analyze family: Are you at higher risk for cancer? Is there any genetic testing or research study that might be useful for your family? Who is the best person to test in your family?
Testing: Arrange for testing, if appropriate. Do you want to have genetic testing? It’s OK not to test!
Informed consent: Explain the benefits and limitations of genetic testing and answer any questions you may have about the process
Results: You will most likely be scheduled for a results appointment, usually one to two weeks after your blood draw. Please note that some tests may take longer than two weeks. Your results appointment will usually take no more than 30 minutes.
Support: Discuss how to talk about this information with family, provide information on support groups, registries and resources, including appropriate referral to high risk/early detection programs at Hoag Family Cancer Institute.
Provide Summary Letter: A report will be sent to you and your referring physician summarizing your consultation and test results (if test is done)
Answer your questions

How to prepare for your appointment

The most important thing you can do to prepare for your appointment is to gather accurate information about your family and send it to us before your appointment (by the date requested in your appointment letter). Please take time to fill out a Family history form. Click here for instructions on how to fill out the Family history form. Accurate family history and medical records provide valuable information that we will use in your evaluation and it may help us decide if any testing is appropriate for you (remember, it’s OK not to test!).

Gather your medical records. If you’ve had cancer, please try to obtain medical records of your diagnosis, especially pathology reports. If your diagnosis was through Hoag Hospital, we may be able to obtain your records from our system.
Whom to include: We don’t really need to know about your distant relatives (e.g. second cousins), but please do include your close relatives who have never had cancer as well as your relatives who have been diagnosed with cancer.
Types of cancer: It is important to know exactly what type of cancer “Aunt Betty” had -- for example, was it cervical, uterine or ovarian? Sometimes a person is diagnosed with a cancer that has spread to another spot in the body. In these cases, we do not consider that person to have two separate diagnoses. For example, if a woman had ovarian cancer that spread (or “metastasized”) to the lung, she is not considered to have both ovarian and lung cancers, only ovarian cancer. If she was diagnosed with ovarian cancer and later with a new lung cancer, then she would be considered to have both ovarian and lung cancers.
Gather medical records of your family members who have had cancer. If pathology reports (records of cancer diagnosis) are not available and your relative is deceased, sometimes death certificates are useful if your relative died of cancer and if you are not sure what type of cancer he or she had.

These websites may be helpful in obtaining a death certificate:

http://vitals.rootsweb.ancestry.com/ca/death/search.cgi
http://vitalrec.com/deathrecords/

Obtain copies of any prior genetic test results. If you or any of your family members have already had genetic testing related to hereditary cancer, please obtain a copy of the results (with the permission of your family member, of course) and send to our office along with your [family history form] prior to your appointment. It is best to return your family history form at least one week prior to your appointment.
Relationships: If you would like to include additional relatives, please let us know exactly how they are related to you. For example: for a great uncle, you might say “mother’s father’s brother” or “father’s mother’s brother.”
Names: Names are optional. If you’d like your family members’ (first) names to appear on your family tree, include them. If you’d rather not have their names appear, simply leave the names off your family history form. Once completed, you may email the form back to us at [email protected], fax it back to 949-764-8102, or mail it to Hoag Cancer Institute, One Hoag Dr, PO Box 6100, Building 41, Newport Beach, CA 92658. If you are completing the form online through the Progeny FHQ option, we will automatically receive your form.

You may find it helpful to bring a support person – family member or friend – because a lot of information is discussed at our appointment. A second person may help remember the discussion as well as provide emotional support.

After your appointment?

Within a few days of your final appointment, you should receive a detailed summary letter from us along with the map of your family that we created together.

Click here for a key to the symbols used in your family map.

Going forward, please keep in touch with us, since cancer genetics is a field with frequent new developments, and we know that family histories can change, too.

Please feel free to call us to discuss any of the following:

If any new discoveries in genetics could mean additional testing is available
If any changes in medical management guidelines occur
If any research opportunities for family members arise
If a family member was diagnosed with cancer, resulting in additional questions regarding your assessment
If your phone number or address changes