Cancer Genetics at the Center for Personalized Genetic Healthcare

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Cancer Genetics at the Center for Personalized Genetic Healthcare
Cleveland Clinic Lerner Research Institute

It has long been recognized that people in some families are prone to developing cancer. The last few decades of genetic research have provided us with the ability to identify some of the genetic risk factors that underlie this predisposition. At the Cleveland Clinic’s Center for Personalized Genetic Healthcare (CPGH), we specialize in the evaluation and management of high risk families. Our goal is to prevent cancer by identifying individuals who have a high risk for developing cancer and offering personalized medical management to them and their family members.

Individuals referred for a Cancer Genetics Evaluation and Consultation will meet with one of our six specially trained cancer genetic counselors. Genetic counselors are skilled in obtaining family histories, performing detailed risk assessments, and communicating complex medical information to patients. A genetic counselor’s expertise includes addressing complicated family issues, facilitating communication among family members, and helping patients to determine the best course of action for them with regard to testing and medical management. Genetic counselors in the GMI's CPGH work closely with geneticists and offer participation in cancer genetics studies. Sessions with a cancer genetic counselor frequently include a discussion of the risks, benefits and limitations of research study participation, when it is appropriate.

During a cancer genetics consultation, patients will also meet with Charis Eng, M.D., Ph.D., a specially-trained clinical cancer geneticist who is dedicated to research, having published over 250 articles and book chapters on cancer genetics and other related topics.



Who should be referred for a Cancer Genetics Evaluation and Consultation?
Individuals referred for an appointment to the cancer genetics service of the CPGH usually have a family history or personal history of cancer. More specifically, if any of the following apply to a person or a person's relative, he or she may have an increased risk for developing cancer:

early age of cancer diagnosis (for example, breast or colon cancer occurring before age 50)
several generations of the family affected by cancer
multiple primary cancers in one individual (for example, breast and ovarian cancer or breast cancer in both breasts)
male breast cancer
clustering of cancers that are known to be genetically related (such as breast and ovarian cancers, or colon and uterine cancers, breast and thyroid cancers)
breast or ovarian cancer and Ashkenazi (Eastern European) Jewish ancestry
an identified genetic mutation in the family (for example, relatives of a known BRCA1/2 gene mutation carrier)
a known cancer syndrome in the family (for example, multiple endocrine neoplasia, Peutz-Jeghers syndrome, Cowden syndrome, hereditary colon cancer, Lynch syndrome and others)

How do I best prepare for a Cancer Genetics Evaluation and Consultation?
An important part of a Cancer Genetics Evaluation and Consultation includes gathering family history information. Prior to your appointment it may be helpful for you to talk with family members about individuals in your family who have had cancer. Specifically, you will want to ask the following:

Who in the family has been diagnosed with cancer, and how are they related to you?
What type of cancer did each affected relative have (e.g. breast cancer, colon cancer, prostate cancer, etc.)
At what age was each individual diagnosed with cancer? If a precise age is not known, it can be helpful to determine the approximate decade in which they were diagnosed (e.g. diagnosed in their 40's, or 70's). For women with breast cancer, you may want to ask if they developed their cancer prior to menopause, or after menopause.
Has anyone been diagnosed with cancer more than once? (for example, breast cancer in each breast, both breast and ovarian cancer)
In what city/state was each relative with cancer treated? This can be helpful at a later date if medical records need to be requested. We can assist you with requesting medical records at the time of your appointment, if we feel that having them is important.
Any other medical conditions that may be present in two or more members of the family
Family or friends are welcome at your appointments with us, as we understand how important it can be to have someone present for support and to help you understand the information we will discuss with you. In addition, your relatives who are also at risk to have inherited an increased risk for cancer may want to hear the information we have to share with you or may have questions of their own.


What happens during a Cancer Genetics Evaluation and Consultation?
Family history information is obtained
For each patient who receives cancer genetic counseling, a detailed family history (called a pedigree) is obtained. The pedigree is used as a tool, allowing us to visually connect individuals in a family and identify patterns. A genetic counselor asks detailed family history questions, with an emphasis on the most important details below:

Who in the family has been diagnosed with cancer?
What type of cancer did each individual have?
At what age was each individual’s cancer diagnosed?
Has any one individual had a recurrence of the same cancer, multiple sites of the same type of cancer (i.e. breast cancer diagnosed in both breasts) or more than one type of cancer?
To help our patients gather important information, we can assist with obtaining medical records. Although we like to have as much information as possible, if family history details are not known (due to adoption or other reasons), we will work with what is available to us. We can often provide helpful information even without medical records or extensive family history information.

Personal medical information is obtained
A personal medical history is also obtained during a cancer genetics evaluation and consultation. This includes details regarding a patient’s medical history, surgical history, and cancer surveillance practices.

Genetic testing is discussed
After assessing the personal and medical histories of a patient, we determine if genetic testing is appropriate and discuss the testing process. Because many people have questions about insurance coverage for testing, we discuss this in the session or ahead of time, if you contact us. We have had excellent experience with coverage for cancer genetic testing and most of our patients have insurance coverage for testing when it is medically indicated. Participation in genetic research studies does not have a cost associated with it.

Genetic testing is ordered, if appropriate
With genetic testing, the goal is to determine if a change in a gene is responsible for causing an individual to have an increased risk for developing cancer. In order to be cost-efficient and precise, it is our job to identify the family member who is most likely to show a genetic mutation and to determine the gene or genes with the highest likelihood of showing a change. Genetic testing generally requires 1-2 tubes of blood and informed consent from the person being tested. A follow-up appointment is made during which patients can discuss the results with a genetic counselor. The next steps, which may include additional testing, testing for other family members, or medical management issues, are discussed at that time.

When a test result shows the presence of a genetic mutation, we assist the patient in creating a medical management plan and relay the information to their referring health care provider. Testing can be offered to other members of the family to help clarify individual cancer risks. Cancer genetic counselors are trained to assist with communicating this information amongst family members in a way that is sensitive to family dynamics and different coping styles of individuals. CPGH genetics professionals have an international network of cancer genetics specialists so that we can connect at-risk relatives in other areas with competent, trained health care providers.

If a test result comes back negative for a genetic mutation, we will consider other testing, perhaps offer the family the opportunity to participate in research, and formulate a medical management plan that takes the patient’s specific test result into consideration.



How can I schedule a Cancer Genetics Evaluation and Consultation?
To schedule an appointment, please call (216) 445-5686 or (800) 998-4785.
Cancer genetics evaluations are scheduled on the main Cleveland Clinic campus on Thursday afternoons.

© 2009 Cleveland Clinic Lerner Research Institute