Skip to Content

Posts (49)

Oct 24, 2019 · Brimgimg my HBOC diagnosis to my genetic counselor? in Hereditary Breast and Ovarian Cancer Syndrome Group

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.

Thank you,
Dena

Oct 24, 2019 · MSH2 had a radical hysterectomy in Lynch Syndrome Group

Hi Poohbear,

I'm so happy to hear that you got an appointment. The genetic counselor will go over a lot with you. It is important you communicate with your relatives before you go to see if anyone in your family has had cancer, what type of cancer, and how old they were when they had it. You will also want to ask your relatives if they have had any genetic testing, if they have had polyps, or if the females had their uterus or ovaries removed. These are all things the genetic counselor will ask you, so it helps to be prepared by talking to your relatives. Another tip we have is to write down any questions you have after the appointment since it can take time for the information to sink in. If you write down your questions, you can ask the genetic counselor at your next visit. Good luck, I'm sure you will be happy you went.

Sep 13, 2019 · Screening should be different based on your Lynch Gene! in Lynch Syndrome Group

Hi @daileyyoga
There are actually likely more people with PMS2 mutation than the other genes. The issue is that historically, we were only testing those who met a strict criteria, and due to the lower risks in PMS2 families, they almost never met the criteria. Therefore, they were not offered testing. Now, with general population testing, we are finding that many people have PMS2 mutations without knowing it!

Sep 13, 2019 · MSH2 had a radical hysterectomy in Lynch Syndrome Group

Absolutely, good luck!

Aug 30, 2019 · Screening should be different based on your Lynch Gene! in Lynch Syndrome Group

Hi @poohbear
You can use one of the resources listed here: https://kintalk.org/find-a-genetic-counselor/
Or you can send me a private message and let me know where you live. I'm happy to help you find someone local.
-Dena

Aug 30, 2019 · Lynch syndrome Shout Out on Good Morning America in Lynch Syndrome Group

Hi @dawna
If you are looking for a provider with expirience in Lynch, try checking this provider directory https://www.hcctakesguts.org/provider-directory or you can read this article to find a local provider: https://kintalk.org/find-a-genetic-counselor/
Hope that helps!
-Dena

Aug 30, 2019 · New MisMatch Repair Gene (MSH3) Found to Cause Colorectal Polyposis and Cancer

Hi @iloveyou123
Where do you live? I can try to find someone local who can help you. Feel free to private message me or email Dena.Goldberg@ucsf.edu.
-Dena

Aug 30, 2019 · MSH2 had a radical hysterectomy in Lynch Syndrome Group

Hi @poohbear,
You need to find a gastroenterologist and genetic counselor with experience in Lynch syndrome. Where do you live? I can help you find someone near you.
Also, read through this page for more information on MSH2:
kintalk.org/msh2
-Dena