What to expect when you see a genetic counselor
A few weeks ago I went to my first appointment with a genetic counselor. My mother was diagnosed with colon cancer at a young age and as a precaution I had a colonoscopy and was recommended to follow up with a genetic counselor. I had no idea what to expect for the most part and was also very nervous about what I would find out in my family history. I hope that this post can help educate you on what the process is like and what to expect because I was surprised about all that was involved.
What is genetic counseling?
- Genetic counseling provides information about genetic diseases to people who may be at risk for genetic disorders. It may be for yourself or a family member and may include follow up with genetic testing.
- The appointment will also include information about screening, prevention, and support options.
Who does genetic counseling?
- A genetic counselor is a health professional that has specialized training in genetics and counseling and is certified through the American Board of Genetic Counseling. They can look at family history and explain how disorders can be passed from parent to child. They also advise on:
- Risks of developing disease based on family history.
- Determining a couple’s risk of having a child with a particular disorder.
- Screening and surveillance options.
- Preventive measures/ care.
- Testing availability, limitations, and accuracy.
How do you prepare for an appointment?
My counselor from the UPMC Cancer Genetics Program called me ahead of time to gather some family history and information and also asked that I arrive an hour early to my appointment to review those results prior to my discussion with a doctor from UPP Gastroenterology Shadyside. I went to him specifically because my family history is for colon cancer.
Preparation included:
- Family history on both parents’ sides of the family. This includes diseases, cancers, cause of death, age of death, and any other important medical information related to the appointment. The tree they build is pretty extensive and includes parents, siblings, children, aunts, uncles, nieces, nephews, grandparents, and cousins.
- Information about types of cancer diagnoses in the family so if you have pathology reports that may also be helpful.
What to expect during the appointment:
- During my appointment, we covered my personal family history and history of preventive screenings and results.
- Based on my information, the counselor then drew a family tree using her computer that went back three generations and categorized each member of the family by cause of death with the age and name underneath it.
- We then discussed my risk as well as limitations and benefits of testing.
After the Appointment:
After you meet with your counselor, you may also meet with the doctor. After the appointment, the doctor and I discussed my preventive schedule and he made recommendations for moving forward based on the results of my counseling session and my risk. At this time we are not moving forward with genetic counseling but I still have to get my colonoscopy every 3-5 years and if family history changes, we will update the information and re-evaluate.
How to Find a Genetic Counselor:
The UPMC Center for Medical Genetics is a regional leader in genetics education and research. If you have any questions about genetic counseling, please call the center at 412-641-4168 or 1-800-454-8155.
Overall Experience
I have always been concerned about my risk for developing the same type of cancer that my mom had, so this process was a way to look at my risk and also give me peace of mind about my risk level. I highly recommend the process to anyone who is in a similar situation as I learned very valuable information about my family history and I am more aware of how I can prevent this type of cancer through living a healthy lifestyle.
