Hereditary Cancer Program

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.

Genetic testing for hereditary cancer consists of an analysis of your DNA through a blood or saliva sample to check for inherited changes or “mutations” that may put them at an increased risk of developing cancer.”

Hoag’s genetic counselors offer genetic testing for almost all types of cancer.

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?

Hoag’s genetic counselors are happy to work with any person with cancer or a family history of cancer who is concerned that it might be hereditary. Features indicating a higher chance of hereditary cancer include:

• Multiple family members (on the same side of the family) with the same type of cancer

• Younger than average age at diagnosis

• Individuals with more than one primary cancer

• Anyone with a rare cancer or tumor

• Any woman with ovarian cancer, Fallopian tube cancer or peritoneal cancer

• Any man with metastatic prostate cancer

• Anyone with pancreatic cancer (adenocarcinoma), paraganglioma, pheochromocytoma, medullary thyroid cancer, adrenocortical carcinoma, retinoblastoma or Wilms’ tumor.

How long is my 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 Radiation Oncology Department or Hoag Cancer Center Irvine. After your registration is complete, a genetic counselor will meet with you to review your personal and family history.

What can I expect from the genetic counselor during my visit:

• 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?

• Test: Arrange for testing, if appropriate. Do you want to have genetic testing? It’s OK not to test!

• Inform: Explain the benefits and limitations of genetic testing and answer any questions you may have about the process.

• Report Results: Your genetic counselor will call you to discuss your test results, which usually take 2-3 weeks. You also have the option to be scheduled for an in-person results appointment once your genetic test results are available.

• 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.

What should I do to prepare for my 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 the 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.

This website may be helpful in obtaining a death certificate: 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. Please see more information about why this is necessary here.

• 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 hereditarycancer@hoag.org, fax it back to 949-764-1449, 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 family tree that we created together.

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

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

Genetics is a field that continues to evolve over time, producing additional gene panels for testing cancer patients. More recently, new testing options for individuals with cancer and/or a family history of cancer have become available through Hoag’s Hereditary Cancer Program.

For individuals or families who have already received testing at Hoag, and results did not find a hereditary explanation, newer multigene panels may be an option.

During your visit, a genetic counselor will review multigene panel options then send for genetic testing. Genetic testing is usually performed at no cost for most individuals who were originally tested prior to August 2015. A small fee will apply for your visit with a genetic counselor.

With any questions, or to schedule an appointment, please call (949) 764-5764. Appointments are available in both Irvine and Newport Beach.

Hoag is pleased to offer hereditary counseling services in Newport Beach, Huntington Beach and Irvine. Appointments are available Monday through Friday from 8 am to 2 pm.

For more information or to make an appointment, please contact us at (949) 764-5764 or hereditarycancer@hoag.org.

Although many patients seek assessment at the recommendation of their physicians, referral from a health care provider is not required.

As genetic counselors, a core component of what we do is guide and support all patients we work with. We understand that it is a big step to begin thinking about the possibility of hereditary cancer for you and your family. We welcome and have experience in working with transgender and/or Gender Diverse (TGD) individuals. At Hoag, our goal is to make you as comfortable as possible throughout this process, by:

• Providing appointments in a time-sensitive manner

• Being available in person, by phone and via email prior to and after your appointments to address your concerns and questions

• Being on time for your appointments

• Welcoming your (adult) family members to all appointments

• Treating your personal and family history information with all of the attention and consideration that it deserves

• Protecting your privacy

• Serving as a source of information on the latest research and developments in hereditary cancer

• Being a life-long resource to you (to re-evaluate your information in the event of any changes)

• Genetic Counseling Assistants

• Oncology Social Worker

• Scheduling Coordinators

• Reimbursement Specialists