Genetic Counseling Frequently Asked Questions
Why do people want to know their cancer risk?
People want to know their cancer risk for many different reasons. The most common reasons are to:
- Understand the risk of cancer for themselves or their children.
- Discover if inheritance played a role in the development of their cancer or a family member's cancer.
- Obtain information about cancer screening tests, such as mammography or colonoscopy, and about how often the tests should be done.
- Make decisions about the use of hormone replacement therapy or preventive surgery.
- Investigate the feasibility of genetic (DNA) testing for cancer-predisposing genes.
What is a cancer risk consultation?
Cancer risk consultation provides information on how inherited and environmental factors may cause cancer in a family or an individual. This information may play a role in maintaining good health. Cancer risk consultation can provide accurate information about cancer risk, cancer screening and genetic testing that can relieve anxiety and provide a sense of control.
What happens at a cancer risk consultation?
At the initial visit, which generally takes 1 to 1 1/2 hours, you will meet with a physician who is a medical geneticist and with a genetic counselor to completely review your family and medical histories.
After identifying your primary concern, the consultation team will discuss the following information:
- An estimation of your risks for specific cancers based upon your age, family history and other risk factors.
- A complete analysis of your family tree.
- The possible role of genetics in your family's cancer.
- Emotional issues surrounding cancer and risk.
- The availability of genetic testing for certain cancer and the risks, benefits, and limitations of genetic testing.
- Cancer screening tests and recommendations for how often you should be screened.
Will I need more than one visit?
In most cases, one visit will be sufficient to allow us to give you information on the role genetics plays in your family's cancer and what your risk of cancer may be. However, we may find during your first visit that additional information on your relatives is needed before a complete risk assessment can be given. If you need a second visit to discuss risk assessment, we will recommend that you schedule it once the additional information has been gathered.
In cases where genetic testing seems reasonable, it will be arranged after your complete risk assessment. We will obtain your informed consent before drawing any blood for genetic testing. Genetic test results will be discussed at a later visit.
Once you are seen through the Cancer Genetics Program for consultation, you may find it helpful to be seen by other specialists to learn about preventive surgery or to seek counseling to help cope with the anxiety cancer risk may cause. We work very closely with all cancer specialists, including surgeons, oncologists, radiologists, pathologists, gastroenterologists, nurses, ethicists, and psychologists, to provide the most advanced information on cancer screening and management of people at high risk for cancer.
May I bring someone with me?
We encourage you to bring a support person, such as your spouse or a significant other, with you. We welcome having one close family member accompany you on your initial visit, as this visit concentrates on reviewing the family history and your medical history in great detail. However, if some issues in your medical history are highly private and not known to your relatives, you may want to come alone.
Who can benefit from cancer risk assessment?
People who are concerned about their family or personal history of cancer can benefit from consultation. However, cancer risk consultation is specifically recommended for:
- People who have several first-degree relatives (parents, sisters, brothers, children) with cancer.
- Families that have two or more relatives on the same side of the family with the same type of cancer or with related cancers, such as breast, ovarian, or colon cancers.
- People who had or people with relatives who had:
- Cancer that occurred at an early age, such as breast, ovarian, or colon cancer before the age of 50.
- Primary cancers in both breasts, ovaries, kidneys, or adrenal glands.
- Two different primary cancers, such as primary breast and ovarian cancers, primary breast and colon cancers, or primary uterine and colon cancers.
- A rare cancer, such as male breast cancer, retinoblastoma, medullary thyroid cancer, or sarcoma.
- An inherited condition, such as multiple intestinal polyposis, neurofibromatosis, or Cowden disease, where cancer occurs more frequently than in the general population.
- A known altered, cancer-predisposing gene.
What kind of information will I need about my family history for the first visit?
A complete family tree is one of the most important pieces of information for determining both if the cancer in your family is due to an inherited tendency and also your overall risk of cancer. When you make an appointment for cancer risk consultation, you will be asked who in your family has had cancer, and whether you would feel comfortable asking for written consent from your relatives to have their medical records reviewed by us. Before your visit, we will fill out and send you a medical records release form with instructions for each of your relatives for whom records are requested.
During the first visit, we will ask you many questions about all of your relatives, including those who have passed away, those who have had cancer and those who have not. We would like information about three to four generations of family members, reaching as far back as great-grandparents and forward to include children and later generations. We will want to know who had cancer, how old he or she was when cancer was diagnosed, in which organ the cancer started and if the relative is living or deceased.
For relatives who have not had cancer, we will want to know if they are living, their current ages, their health conditions and if they have had any surgeries. For relatives who did not have cancer and are deceased, we will want to know how old they were when they died, their cause of death and if they had serious health problems during their lifetimes. We realize that many people may not have all the answers to these questions. It may be a good idea to talk to older family members beforehand. Please know that, although this information is of great use to us in assessing your family history of cancer, we will still see you for a consultation even if you have limited knowledge of your relatives and their health status or are unable to have medical records released to us.
How is patient confidentiality maintained?
All of the records generated by your visit to the Program are confidential. Some of your records will be maintained in a private, locked office, while others will become part of the general electronic record. Your records are accessible by insurance companies to which a consultation bill or genetic testing bill is submitted.
Will my doctor receive information from my consultation?
For those patients who are referred by their physician, a consult letter and test results are sent to the referring physician.
Will my insurance cover the cost of a genetic testing?
Some insurance companies will cover all or part of the cost of consultation and genetic testing as an outpatient visit. Because each insurance company differs and may change coverage terms over time, we recommend that you check with your plan directly. We are happy to assist you in gathering the necessary information, such as procedure codes, so that you can find out if your carrier will cover your visit and testing.
Do I need a referral from my doctor?
You can be self-referred or referred by any health care provider for consultation.
How do I make an appointment?
To schedule an appointment, call the Cancer Genetics Program at 1-800-454-8156 between 8:30 a.m. and 4:30 p.m., Monday through Friday. During evenings and weekends you can leave a message. You can either call directly or have your physician call to make the referral.