Your First Visit
The following information will help you prepare for your first visit with the genetic counselor.
- Preparing for Your First Visit
- What to Expect at Your First Appointment
- Questions to Ask on Your First Visit
- Medical Records
- Genetic Testing
Preparing for Your First Visit
Is there anything I can/should do before my appointment?
Your doctor has referred you for hereditary cancer risk assessment and genetic counseling to discuss your personal and/or family medical history. So that the genetic counselor can accurately evaluate your family history, we are asking you to fill out a questionnaire and bring it to your genetic counseling appointment. Your answers are private, secure and provide important information that enriches communication between you and the genetic counselor.
How do I find all the information to complete the Genetic Risk Assessment Questionnaire?
Please give yourself time to complete the questionnaire. You may find it helpful to talk to your family members to find out as much medical information as you can about your family history.
To speed up the process of completing the questionnaire, it may be helpful to gather information (current age or age at death, and general health history) on your family members. Specifically, we will ask about your immediate family members, including your parents, siblings and children. We also want to know about your extended family members, including your aunts, uncles, cousins and grandparents, on each side of your mother and father’s family.
For family members who have had cancer, you will need to obtain the following information:
- Type of cancer (e.g., breast, colon, ovarian, etc.)
- Age cancer was diagnosed
- Current age. If deceased, age and cause of death (may or may not be from cancer)
- Clarify whether the cancer was unilateral (e.g., one breast) or bilateral (e.g., both breasts)
- Clarify whether the family member with cancer developed a second cancer. If yes, it is important to try to clarify whether the second cancer was a metastasis (spread from the first cancer), or a new primary cancer (new separate cancer)
Correct information about the types of cancer in your family is very important in assessing cancer risk. It may also be helpful to locate medical records from family members who had cancer. These records include pathology reports of tumors, surgical reports and hospital discharge summaries regarding their cancer course.
We understand you may be unable to collect all the information about your family history of cancer. Genetic counseling will be based on the information that you provide. The following documents provide more information about how to gather family information:
What do I need to bring to my first appointment?
Once you have completed the questionnaire, you are ready for your appointment. Please bring the questionnaire to your appointment along with any copies of medical records (including genetic test results, pathology reports, etc.) if you have them.
What is genetic counseling?
Genetic counseling is a process of providing information and support about genetics and inherited conditions to an individual or family. The goal of genetic counseling is to provide clear and clinically relevant information about genetic risk factors in an atmosphere of support and education.
Who are genetic counselors?
Genetic counselors are health care professionals with graduate degrees and experience in the areas of medical genetics and counseling. Most enter the field with a background in biology, genetics, nursing, psychology, public health or social work.
What can I expect during my first visit to a genetic counselor?
During your first visit, the genetic counselor will review your family medical history, and help you understand the role of genes in causing cancer. The genetic counselor will perform a cancer risk assessment based on the information you provide. 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. We will also give you a general estimate of your personal cancer risks. During the risk assessment, we will discuss appropriate screening and prevention for you and your family. If eligible, you will be given information about research programs at Banner MD Anderson Cancer Center.
I just want genetic testing; why do I need genetic counseling?
Genetic testing is not recommended for everyone. During your cancer risk assessment, we will help you decide if genetic testing is right for you. Genetic testing usually begins with a family member who has had cancer. Individuals should thoroughly consider whether or not to have genetic testing. During the genetic counseling visit, we will discuss any concerns you may have about genetic testing as well as possible results, benefits, risks and limitations of the testing. We will also discuss cost, insurance coverage and issues of genetic discrimination.
I don’t want to have genetic counseling because I don’t want to have genetic testing.
You will have a cancer risk assessment during your first visit. At that time, we will discuss the risk for hereditary cancer in your family. We will also discuss whether or not genetic testing could be helpful for your family. Not all patients who have genetic counseling decide to have genetic testing. The genetic counselor is here to give you the information that you need to make an informed decision about genetic testing.
Can family members come with me to my first appointment?
You are welcome to invite anyone to come with you (family, friend, etc.) to your appointment, but you will be the main focus of the consultation. If you bring a friend or family member with you and they have specific questions or concerns, it may be necessary to schedule a separate appointment for them.
Why do I have to go through genetic counseling?
You do not need to have genetic counseling if you do not want to. However, your physician may have recommended that you consider genetic counseling because of your personal or family history of cancer. If you are interested in a personalized cancer risk assessment and/or having genetic testing for a particular gene, you should have genetic counseling first to discuss possible test results as well as the benefits, risks and limitations of genetic testing. We will also discuss cost, insurance coverage and concerns about genetic discrimination. The American Society of Clinical Oncology (ASCO) recommends that genetic testing only be done in the setting of pre- and post-test counseling.
What information can I expect to receive during my first visit?
During your first visit, the genetic counselor will review your family medical history, and help you understand the role of genes in causing cancer. The genetic counselor will perform a cancer risk assessment based on the information you provide. 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. We will also give you a general estimate of your personal cancer risks. During the risk assessment, we will discuss appropriate screening and prevention for you and your family.
How long is my first visit?
The first genetic consultation visit will usually last 60-90 minutes.
How many visits will I need?
Once a genetic counselor has met with you for your cancer risk assessment, she can discuss with you how often you may need to be seen again. This often depends on follow-up of additional family history information, whether you or a family member decides to have genetic testing and the complexity of the situation.
Will a physician be present during my genetic counseling visits?
A physician may or may not be present at all genetic counseling visits. However, the genetic counselor will consult with our team of physicians about your medical and family history.
Will I always meet with a genetic counselor during my visits?
Yes, a genetic counselor will always be present to discuss your medical and family history.
How do I obtain a family member’s medical records?
If you need to obtain a family member’s medical records, your family member will need to sign a form authorizing release of their medical information to you or your health care provider. Your family member will need to indicate which information from their medical record they would like to release to you (pathology report, surgical report, genetic consultation notes, genetic test results, etc.). If that family member is deceased, the closest living relative must sign the release form.
How do I obtain a copy of my genetic consultation notes?
Records are available from the Release of Information Office. You must provide a signed Authorization for Disclosure of Information form. You can complete this form at the Welcome Center on the first floor of the Cancer Center. You must specify on the form that you would like to release your genetic consultation notes.
Release of Information office: (480) 543-2060
How do I obtain a copy of my pedigree?
A pedigree is the drawn family tree that you and the genetic counselor developed during your first genetics consultation. Pedigrees are available from the Clinical Cancer Genetics Program. Please contact your genetic counselor to obtain a copy.
Will the information discussed during the genetic counseling appointment(s) be part of my medical records?
Yes. This information is made available to your health care providers so they can make appropriate medical management recommendations and decisions.
Will my genetic test results be part of my medical records?
Yes. The results of any genetic testing will be recorded in your medical records. This information is made available to your health care providers so that they can make appropriate medical management recommendations and decisions.
Will my insurance cover my genetics visit?
Our services are covered by many insurance companies. In order to verify if your insurance company will cover your visit, please contact your Patient Financial Services Specialist.
How is genetic counseling going to affect my insurance?
There is no evidence that having a cancer risk assessment will impact your insurance. During your first visit, the genetic counselor will provide you with information about genetic discrimination.
How is genetic testing going to affect my insurance?
There is current state and federal legislation that provides protection from genetic discrimination to individuals enrolled in group health insurance plans. The genetic counselor will provide you with information about genetic discrimination before you have genetic testing.
How do I get a letter of medical necessity so that my insurance can cover the genetic counseling visit?
If your insurance requires a letter of medical necessity for your visit to be covered, please contact your referring physician and ask them to provide your insurance the letter of medical necessity.
How do I get a letter of medical necessity so that my insurance can cover genetic testing?
If you choose to undergo genetic testing, the genetic counselor will discuss insurance coverage and letter of medical necessity. The genetic counselor will not be able to write a letter until after you have received a cancer risk assessment.
What is genetic testing?
During your cancer risk assessment, the genetic counselor will discuss whether genetic testing is an option for you or your family to consider. Genetic testing involves analyzing a blood sample for specific changes in the DNA, or genetic information. The decision to have genetic testing is a personal choice that can be made at the time of the counseling visit, or at a future date.
Is genetic testing recommended for all patients?
Genetic testing is available for some families with a strong family history of certain types of cancer. During your cancer risk assessment, we will help you decide if genetic testing is right for you or your family. It is best to begin genetic testing with a family member who has had cancer or a precancerous condition that suggests susceptibility to cancer. The genetic counselor will discuss who the best person in your family is to consider genetic testing.
Will I need to fast before my blood draw for genetic testing?
No. There is no special preparation before you have your blood drawn for genetic testing. Patients typically have one to two tubes of blood drawn for testing. The genetic counselor will explain the process of genetic testing before you have your blood drawn to answer any of your questions and concerns.
How accurate is genetic testing?
Once a genetic test is determined to be appropriate for you or your family, the genetic counselor will discuss with you the sensitivity of the test (ability to detect genetic changes).
How much does genetic testing cost?
The cost ranges from $350 - $4,000 or more, based on the specific test ordered. The genetic counselor will determine the specific genetic test that is recommended for you and discuss the cost of testing prior to ordering any genetic testing. Some insurance companies cover the cost of genetic testing.
How long will it take to get my genetic test results?
At the time of your blood draw, the genetic counselor will discuss with you the estimated length of time it will take the lab to analyze your sample. The range is usually from two weeks to one month. The genetic counselor will contact you with your test results when they become available. If a follow up appointment is necessary to discuss your results, the genetic counselor will inform you at the time you are contacted.