What happens at an appointment at the Genetics Clinic?
You will meet with a genetic counselor for approximately one hour. During your first visit, the genetic counselor will review your family medical history, and help you understand the role of genes in causing cancer.
We will discuss the chance that a risk for cancer might be passed through the genes in your family and discuss any genetic testing that could be helpful for your family. If genetic testing is available that may be useful for you, the genetic counselor will explain its costs, benefits and limitations. If you choose to proceed, we arrange the test, discuss your results with you and provide a summary to your doctors.
We will also give you a general estimate of your personal risk to develop cancer. You will discuss cancer screening, potentially helpful medications, preventive surgeries or lifestyle choices as ways to reduce your risk of developing cancer. This helps you to be better prepared when you discuss these with your doctor.
If you wish, the genetic counselor can help you to communicate with family members about hereditary risk.
Who should consider genetic counseling for hereditary cancer risk?
Family history features associated with inherited cancer include multiple generations affected with the same type or related types of cancer, individuals who have developed cancer at unusually young ages, and individuals who have developed more than one primary cancer.
Here is a list of the most frequent reasons for referral (personal or family history):
- Breast cancer before age 50
- Ovarian (including fallopian tube and primary peritoneal) cancer at any age
- Male breast cancer
- Colorectal cancer before age 50
- 10 or more colorectal adenomas (pre-cancerous polyps) found on the same exam
- Two primary cancers in the same person
- Combination of breast and ovarian cancers in several relatives
- Combination of colon and endometrial cancers in several relatives
A rare cancer such as medullary thyroid cancer, pheochromocytoma/paraganglioma, multiple meningiomas or schwannomas.
Do female cancers on my father's side of the family affect my risk?
Yes. Genes that cause breast, ovarian and endometrial cancers can be passed through male family members. Because men do not have as much breast tissue — and no ovaries or uterus — the gene is passed silently through men. Hereditary cancer is just as likely to come from the father's side of the family as it is to come from your mother's side.
Could I lose my health insurance if I go to a genetic counselor or have a genetic test?
No, although this is a very common concern. Genetic discrimination is illegal in many states. Minnesota and Wisconsin both have strong state laws, which cover both group and individual policies. These laws say that an insurance company cannot require you to have a genetic test before deciding whether to give you health insurance, use previous genetic test results to determine your eligibility or rates, or cancel your insurance based on a genetic test result. While the potential for genetic discrimination is a valid concern, tens of thousands of people have had genetic testing without experiencing any problems with health insurance. There are, however, no such legal protections in place for life or disability insurance.
For more information, please visit The National Human Genome Research Institute.
Is genetic counseling and testing covered by insurance?
At this time, insurance companies treat genetic counseling like a regular office visit; in fact some insurance companies require counseling prior to testing. Insurance coverage for genetic testing varies according to each policy. Discussing costs and the procedure for verifying insurance coverage for genetic testing is part of the genetic counseling appointment.
I don't want genetic testing. Why do I need genetic counseling?
The main purpose of cancer genetic counseling is to make sure you and your doctors have all the information you need to make good medical decisions. This includes information about risk due to family history and setting up a schedule of how frequently you should do cancer screenings, like mammograms or colonoscopies. It is okay to have genetic counseling to get information about hereditary risk without choosing to go forward with genetic testing. Sometimes we may suggest a different person in your family undergo genetic testing.
I don't have children. Why should I be concerned about hereditary risk?
If you have hereditary risk, you may be at risk for a second cancer — which may be preventable or detected earlier when it is more treatable. Knowing about your risk may affect your choices. You may also have other family members, like brothers or sisters, who could benefit from this information.
My children already know about the family history of cancer. Why should I consider genetic testing?
A positive genetic test result can provide many answers, such as why the cancer happened, and whether another cancer could occur. It helps define risks for family members. When hereditary risk is present, cancer screening for the next generation usually starts earlier, is more frequent, and uses different tests that may not be offered to people at average risk. Also, if you have had a positive gene test, other family members have the opportunity to find out whether they inherited that copy of the gene — or not. Not everyone in the family inherits the cancer predisposition. They (and you) may be relieved to find out that they did not inherit the increased risk.
I have just too much on my plate right now to add one more thing, but my family is very concerned. Do I need to do this right now?
Yes and no. The reality is that you may not have the time or energy for it right now. Or, it may seem more important to family members that it does to you. Some people make the appointment as soon as possible after their diagnosis, because the information might influence their surgical decisions.
If family members are worried, you may suggest that they make an appointment for themselves to discuss their hereditary risk. You do not have to have a cancer diagnosis to have genetic counseling. For genetic testing, however, it is usually preferable to test the person who has had cancer first.
I'm adopted and have no information about my family history. How do I find out about my genetic risk?
If you had cancer at an early age, then you may want genetic testing to try to clarify your risk. Your past medical history and the specific type of cancer you had also may hold clues about whether the cancer could be inherited.
How do I make an appointment?
Call the Cancer Care Center at 651-326-7610 or have your doctor fill out a referral form and return it to us. Once a referral has been received, you will be contacted over the phone to set up an appointment.