Hi @marcella – this is a very good question. Yes, although most people have a pre-test and post-test genetic counseling visit, many patients come to us with testing already done for the post-test visit only. There are a few things that a genetic counselor can do for you that your doctor and literature may not be able to:
1. Testing Family/ Determine Family Risk:
Part of our role as genetic counselors is taking care of our patients, but also their family members. Genetics is different than any other specialty in that it impacts everyone in a family, not just the patient. We do a thorough family history collection to determine who else is at risk, and then we help the patient communicate this complex information with these relatives. Many times, we help coordinate testing and care for multiple family members, even if they are across the world. When a person has a mutation, their relatives should be able to get testing for very little cost if any. We help find the most affordable and appropriate testing for family members.
2. Further Risk Assesment:
Genetic testing is only part of the risk assessment. A person's family history is another large piece of information we use when assessing someone's cancer risk. For example, not all of the Lynch screening recommendations are appropriate for all people with Lynch, it is very dependant on the patient's personal and family history. If someone has a mutation, but they also have a family history of something unrelated to that gene mutation, they may still need further screening based on family history alone. This can only be done with a thorough review of a patient's personal and family history.
3. Followup coordination
It is one thing to know what screening to do, but another thing to know who specializes in that type of screening or syndrome and how to get an appointment with him or her. Since many of these syndromes involve coordinating care with multiple doctors, a genetic counselor can easily refer you to doctors who know a lot about your syndrome and see many patients with it. This takes a lot of time to research on your own.
4. Research Updates
Your doctor has a lot of responsibilities. It would be unrealistic to assume he or she is on top of the latest research in your syndrome if he or she doesn't specialize in it. This is why genetic counselors exist. The field of genetics is rapidly changing, and genetic counselors are uniquely qualified to provide the most up-to-date information and recommendations.
5. Psychosocial Aspects of Diagnosis: Many times receiving a new diagnosis can be stressful, scary, upsetting, etc. A doctor can be helpful, but a genetic counselor has more face-to-face time with patients to discuss how their results are impacting them and their families. This can be especially beneficial, even when someone doesn't think they need to talk about it. Many people leave after a post-test genetic counseling session saying they feel less anxious, more knowledgable and in control of their health.
Those are a few of the benefits to seeing a genetic counselor. I hope that helps answer your question.