Cancer Risk and Genetics
The Genetic Counseling and Testing Service at the H. Lee Moffitt Cancer Center was established in 1996. We offer genetic counseling and testing for people who may be at an increased risk for cancer. All genetic services are completely confidential.
Cancer Genetic Counseling Overview
Cancer Genetic Counseling is a process that aims to:
- Educate individuals regarding possible reasons why cancer can “run in a family”
- Provide an individual risk assessment regarding the likelihood that the cancer in a particular family is inherited and whether testing for a specific cancer risk gene is appropriate
- Help inform families about cancer risk reduction options, and
- Empower individuals to make educated, informed decisions about genetic testing and cancer screening and prevention (current and future).
Clinical Services
Genetic Counseling provides:
- A detailed review of an individual’s medical history and family history of cancer to determine if a cancer does indeed “run in the family”
- Discussion of an individuals specific cancer risks and ways to reduce these cancer risks
- Development of a cancer screening plan based on an individuals needs
- Genetic testing for appropriate individuals, which involves a blood test for those who are at risk for some types of inherited cancer
- The opportunity to participate in clinical research studies at Moffitt
Moffitt’s Genetic Counseling and Testing Service Team
We have a multi-disciplinary team of medical professionals including two board-certified medical geneticists (physicians), three genetic counselors, and physicians and nurse practitioners with many specialties.
Frequently Asked Questions
Please click on a question to be linked to the answer.
Who are Genetic Counselors?
Why would someone want to get Genetic Counseling?
What happens during the first genetic counseling appointment?
Will more than one visit be required?
How might I use the results of genetic counseling and testing?
I’ve already had cancer. Why should I be tested?
Is genetic counseling the same thing as genetic testing?
Will my blood be drawn for genetic testing at the time of the first appointment?
May I bring someone with me to the genetic counseling appointment?
I want genetic testing. Do I need to have the genetic counseling?
Will my insurance cover the cost of the genetic counseling visit?
Will my insurance cover the cost of genetic testing?
How do I make an appointment?
Is a referral needed for my visit?
Is there anything I need to do prior to my appointment?
What about insurance discrimination, should I be concerned?
What genetic tests are offered?
Who are Genetic Counselors?
Genetic Counselors are health care professionals with specialized graduate degrees and training in medical genetics and counseling. Genetic counselors work as part of a medical team consisting of medical geneticists (physicians specializing in genetics), nurses, oncologists, social workers, and others.
Why would someone want to get Genetic Counseling?
Cancer genetic counseling may be beneficial for families that have any of the following:
- Several relatives on the same side of the family have the same or related types of cancer
- Multiple generations with family members diagnosed with cancer
- One or more family members developed cancer at an early age (< 50)
- A relative with the same type of cancer in matching organs, for example breast cancer diagnosed in both breasts
- A relative has had more than one type of cancer (not due to spreading or metastasis), for example a woman diagnosed with both breast and ovarian cancer
- Male breast cancer
- Ashkenazi Jewish ancestry
What happens during the first genetic counseling appointment?
The first genetic counseling appointment involves meeting with a genetic counselor and a physician (a medical geneticist) to discuss:
- The possibility of an inherited risk for cancer in your family
- Your estimated risk of developing certain types of cancer based on your age, family history and other factors
- Screening tests or other options available for managing your risks for cancer
- Emotional issues surrounding cancer and risk
- The impact of genetic testing on family members
- The availability of genetic testing
In order to provide you with appropriate information, the genetic counselor will first gather information from you about your personal medical history and family cancer history. If genetic testing appears to be an option for your family, the benefits, risks and limitations of genetic testing will be reviewed with you so that you can make an informed decision about whether to undergo testing or not. The appointment lasts between one and two hours.
Will more than one visit be required?
The genetic counseling process usually requires three visits. The purpose of the first visit is to provide pre-test genetic counseling. For individuals who decide to pursue genetic testing, a second visit is required to have blood drawn for testing. The third visit is to receive test results. We meet with patients in person to discuss test results; NO results are given by phone. In special circumstances, blood may be drawn at the first visit, but this will need to be discussed with a genetic counselor.
How might I use the results of genetic counseling and testing?
The information provided may help to estimate a person’s risks for developing certain types of cancer, and to create an individual plan for screening and management based on those risks. This information may also be very useful for other family members.
I’ve already had cancer. Why should I get tested?
Genetic counseling and testing may provide information regarding risks to develop another cancer and options for screening and prevention. This process may also provide valuable information for loved ones.
Is genetic counseling the same thing as genetic testing?
No. Genetic counseling is a form of education and risk assessment. Individuals having genetic counseling learn about their specific risk factors based on reported information. Having genetic counseling does not mean that a person has to proceed with genetic testing. Many individuals who have genetic counseling do not have genetic testing. Genetic testing in a cancer setting involves specific analysis of blood to look for a gene change that is linked with an increased risk to develop cancer.
Will my blood be drawn for genetic testing at the time of the first appointment?
No. Blood for genetic testing will typically not be drawn at the time of the first visit. (If there is a specific circumstance that strongly justifies the need to have blood drawn during the first visit, this should be discussed with the genetic counselor.)
May I bring someone with me to the genetic counseling appointment?
We encourage you to bring a support person. However, if some issues in your personal and medical history are very private, you may want to come alone.
I want genetic testing. Do I need to have the genetic counseling?
Yes. Genetic counseling by an experienced health care professional is an essential part of the genetic testing process and is critical for accurate result interpretation and management. During the genetic consultation, the risks, benefits, and limitations of genetic testing are discussed. The consultation also includes a discussion of medical management options for an individual and his/her family as well as information regarding issues such as the importance of confidentiality.
Will my insurance cover the cost of the genetic counseling visit?
The majority of insurance companies cover at least part of the consultation charges (each visit can cost $400 or more), however every policy is different. Please check with your insurance carrier to see what type of coverage you have.
Will my insurance cover the cost of genetic testing?
There is not a way for Lifetime to preauthorize coverage for testing prior to your initial visit. The laboratory tests are performed by independent outside labs. During your initial visit, the genetic counselor will determine if you are eligible for genetic testing, which test(s) would be most appropriate, and whom in the family (ideally) should be tested first. The genetic counselor will discuss the cost of the testing with you (up to $3000), and at your request, will help you see if your insurance company will pay for testing.
How do I make an appointment?
To make a genetic counseling appointment, please call 813-745-6769.
Is a referral needed for my visit?
Some insurance plans require a referral for office visits. The billing department at Lifetime Cancer Screening and Prevention Center will determine if a referral is needed, prior to your visit. If you have any questions, please call 813-745-4848.
Is there anything I need to do prior to my appointment?
Prior to a genetic counseling appointment, we ask that all patients please fill out a questionnaire. This questionnaire will ask questions regarding your personal medical history as well as your family history of cancer. This information will be used to provide a risk assessment regarding the likelihood of an inherited cancer risk in the family.
What about insurance discrimination, should I be concerned?
At this point in time, it does not appear that billing health insurance companies for genetic counseling or testing represents a major risk, as there are several legislative protections for people living in Florida. Under Florida law, insurance companies are not allowed to ask for genetic test results, even if they pay for the testing. However, no protection is 100%. This is why our genetics professionals will take special care with your genetic information and discuss with you ways to ensure the confidentiality of your information.
What genetic tests are offered?
The Genetic Counseling and Testing Service at H. Lee Moffitt Cancer Center provides a variety of genetic tests. If there is genetic testing that you are interested in that is not listed here, please call 1-888-MOFFITT to find out if this is testing that can be provided. The most common tests provided through H. Lee Moffitt Cancer Center are:
Hereditary Breast and Ovarian Cancer
Two genes, BRCA1 and BRCA2 (Breast Cancer 1 and Breast Cancer 2), have been identified and account for the majority of inherited breast and ovarian cancer. Mutations (changes or alterations in the genetic material) in these genes lead to an increased risk of breast and ovarian cancer. BRCA1 and BRCA2 gene testing done by a blood test. Testing is done at Myriad Genetic Laboratory Inc., www.myriadtests.com, located in Salt Lake City Utah. This test is called BRACAnalysis. There are different tests that can be ordered depending on the family history and if another family member has previously tested positive. A genetic counselor will determine which test is most appropriate to order.
The following factors may indicate a genetic risk for breast and/or ovarian cancer:
- Several closely related family members with breast and/or ovarian cancer,
- Breast cancer at an early age – generally before age 45
- Breast cancer occurring more than once in the same person
- Breast and ovarian cancer in the same person
- Male breast cancer in the family
- Families of Eastern European Jewish ancestry (Ashkenazi)
Hereditary Non-polyposis Colorectal Cancer
Tests are now available to analyze certain genes for alterations that are linked to an increased risk for colon cancer. There are two inherited colon cancer syndromes that account for approximately 5 percent of all colorectal cancers. One, hereditary non-polyposis colon cancer (HNPCC), has several genes involved including: MSH2, MLH1, and MSH6. Myriad Genetic Laboratory Inc., www.myriadtests.com, performs testing for these genes. The lab is located in Salt Lake City, Utah. There are different tests that can be ordered depending on the family history and if another family member has previously tested positive. A genetic counselor will determine which test is most appropriate to order.
What factors may indicate HNPCC in a family?
- Several closely related family members with colon cancer
- Colon cancer at an early age – generally before age 50
- Colon cancer occurring more than once in the same person
- The presence of endometrial, ovarian or stomach cancer in a family
- Families of Eastern European Jewish Ancestry (Ashkenazi)
Familial Adenomatous Polyposis
Tests are now available to analyze certain genes for alterations that are linked to an increased risk for colon cancer. One, familial adenomatous polyposis (FAP), causes individuals to develop hundreds to thousands of polyps lining the colon starting as early as the teenage years. The gene that is linked to FAP is called the APC gene. Myriad Genetic Laboratory Inc., www.myriadtests.com, performs testing for these genes. The lab is located in Salt Lake City, Utah. There are different tests that can be ordered depending on the family history and if another family member has previously tested positive. A genetic counselor will determine which test is most appropriate to order.
Hereditary Melanoma
Approximately 10 percent of melanomas occur in individuals with an inherited risk for melanoma. Inherited melanomas usually appear at an early age and individuals tend to have more than one diagnosis of melanoma during their lifetime. Testing is now available to detect alterations in certain genes that predispose people to hereditary melanoma. Mutations in these two genes, CDKN2A (also known as p16) and CDK4, have been found to cause an increased risk of melanoma in families.
What risk factors may indicate an inherited risk for melanoma?
- Two or more closely related family members with melanoma
- A family member or members who developed melanoma at an early age – before age 30
- Melanoma occurring more than once in the same person
- Individuals with dysplastic nevi (atypical moles)
Von Hippel Lindau Syndrome
Von Hippel Lindau, VHL, is a rare multi-system condition that predisposes individuals to many types of tumors. The areas of the body where they may develop include the brain, spinal cord, eye, kidneys, adrenal glands, pancreas, inner ear, and in males, in a structure called the epididymis in the scrotum. Testing is now available to detect alterations, or mutations, in the gene that causes VHL.
Li-Fraumeni Syndrome
Li-Fraumeni syndrome is very rare and is characterized by the early onset of certain cancers in children and young adults. The cancers that are associated with this syndrome include soft tissue sarcomas, breast cancer, leukemia, osteosarcoma, melanoma, colon cancer, pancreatic cancer and cancer of the adrenal cortex and brain. The gene involved in Li-Fraumeni syndrome is called p53. Testing is now available to detect alterations in the p53 gene.