Frequently Asked Questions about Genetic Counseling

What happens at an appointment at the Genetics Clinic?

You will meet for one to two hours with a genetic counselor who has special training to recognize and explain hereditary risk.

Together, you review your family history. The genetic counselor explains what signs of hereditary risk are in the family and how that risk affects your medical choices. You discuss in detail cancer risk reduction options — screening tests, medicines, preventive surgeries or lifestyle choices. 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.

If genetic testing is available that may be useful for you, the genetic counselor explains its costs, benefits and limits. If you choose to proceed, she arranges the test, discusses your results with you, and provides a summary to your doctors.

Who should consider genetic counseling for hereditary cancer risk?

Features of hereditary risk include several family members with the same type or related types of cancers, cancer at an early age, or cancer more than once in an individual. Here is a list of the most frequent reasons for referral:

Breast cancer before age 50
Ovarian cancer at any age
Male breast cancer
Colorectal cancer before age 50
10 or more colorectal adenomas (pre-cancerous polyps)
Two separate cancers in the same person
Combination of breast and ovarian or other cancers in several relatives
Combination of colon and endometrial or other cancers in several relatives
A rare cancer *

*Rare cancers that are often inherited include medullary thyroid cancer, cancer of the adrenal cortex, pheochromocytoma and carotid body tumors, fallopian tube cancer and primary peritoneal cancers.

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 breast and ovarian cancers come from the father's side of the family half of the time.

I had cancer at an early age, but there is no family history. Can cancer skip generations?

Yes. Cancer predisposition genes elevate risk, but some people with the gene do not develop cancer. Therefore it can appear to skip generations. We do not know why this happens.

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.

Is genetic counseling and testing covered by insurance?

At this time, insurance coverage treats genetic counseling like a regular office visit. Insurance coverage for genetic testing varies according to your policy. We will work with you to make sure there are no unanticipated costs. Discussing costs and the procedure for verifying insurance coverage for genetic testing is part of the genetic counseling appointment. Your questions will be answered before any genetic testing is ordered.

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. Most people find genetic counseling useful even if they do not want a genetic test. Sometimes genetic counseling provides reassurance that the risk was not as high as anticipated or that cancers do not appear to be due to a high-risk gene. It is okay to have genetic counseling to get information about hereditary risk without choosing to go forward with genetic testing. It's your choice.

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.

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 they want the information as they decide about the extent of surgery. Others wait until after the initial treatment is done.

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 651-232-7090 and ask for a Genetics Clinic fax referral form. Have your doctor fill out the form and return it to us. We will send you some family history forms. Once we get the forms back from you, we will schedule the appointment.

Breast Care

Related Links

Frequently Asked Questions about Genetic Counseling