"Genetics is an integral part of cancer prevention. Know your genetics. Get to know a GC."
-Mary Freivogel
For this month's chat, we were joined by the National Society of Genetic Counselors (@GeneticCouns) Past President Joy Larsen Haidle (@JoyLarsenHaidle) and NSGC President-elect Mary Freivogel (@MaryFreivogel) to discuss Genetic Counselors and Understanding Gynecologic Cancer Risk. We had 45 participants and achieved over 1.7 million impressions. Additional analytics may be found here.
A small sample of the responses to each of our topic questions appear below. You may read the full transcript here. (Please scroll down for a list of valuable resource shared during the chat. )
T1: What is genetic counseling and why it is recommended prior to genetic testing?
- @GeneticCouns help estimate #cancer risk, discuss test options & explain how test results might be used in your medical care
- We (Genetic Counselors) help to make sure genetic testing is the right choice for you and your family!
- Not everyone would benefit from a genetic test. Talk to a #geneticcounselor to learn if testing is useful for you.
- Genetic counselors help people understand & adapt to med,psych & familial implications of genetic contributions to disease…
- T2A @SGO_org recommends genetic testing: https://t.co/Q3rMU66Qey
- Cancer diagnosis before age 50 or strong family history of cancer often warrants genetic testing.
- T2 #Gyncsm: Family history of #ColonCancer, brother tested positive for #Lynchsyndrome. Having a child influenced decision, and yes!
- T2 My gyn onc spoke to me about genetic testing. I then talked to a genetic counselor re: my "pedigree" and she recommended the test
- T2 yes had genetic testing. Breast & ovarian cancer in family. #brca mutation 3 generations
- T3 At least 24 genes are associated with ovarian cancer risk. Several have uterine cancer risk.
- T3 A genetic counselor can help determine the best test based on your personal and family history. #gyncsm @GeneticCouns
- Many more than BRCA1/2! Lynch syndrome is colon, uterine, ovarian, stomach cancer, etc... Talk to a GC if you are concerned! #gyncsm
- T3 Many mutations associated with Gyn Cancers: BRCA 1/2, Lynch Syndrome, Cowdens' Syndrome. Li Fraumeni . Often other cancers too.
- T3: Many people, even PJS patients, don't know that Peutz-Jeghers Syndrome adds risk for gyn or breast cancer
- Find a Genetic Counselor near you at https://t.co/JHZReh6ReE #gyncsm @GeneticCouns
- Most large programs have a cancer genetics counselor within the program. Ask your doc for a referral.
- My @GeneticCouns blog will help you prepare for a genetic counseling visit. https://t.co/murxf0ekQH
- Before a #geneticcounseling meeting, discuss #familyhealthhistory with relatives. Learn type of #cancers & age at diagnosis.
- Knowing who in the family had what type of cancer diagnosed at what age is helpful for proving pts w/cancer risk assessment.
- Most but not all insurance covers both the genetics consultation and the testing
- GC for BRCA1/2 testing is often covered as preventive service as per the Affordable Care Act. Check your policy for details.
- Talk to your GC/MD about testing options--if cost is a barrier, there may be financial assistance available to help!
- Risk of genetic discrimination is very low. Often far outweighed by info gained from genetic testing. Talk to a GC!
- Life insurance is a HUGE problem , not protected under #GINA. Seek coverage PRIOR to genetic counseling/testing.
- Everyone has a chance of developing cancer. Having a mutation raises the chance above the general population.
- #Cancer risk is not the same with all genes. Some genes confer low, medium or high risk.
- An average woman has a 1.5% chance of developing ovarian cancer. BRCA1 mutation raises chance to 45%. Lynch 4-24%.
- Some women will consider surgery to decrease their cancer #risk. Speak to a @GeneticCouns to discuss your cancer
- @GeneticCouns has resources. Talk to a genetic counselor to help gather current info tailored to you. https://t.co/6DC5QzpmDQ
- We recommend people see only CGC Certified Genetic Counselor
- Where can you find the latest info and get help w options for prevention or treatment? A genetics counselor!
- My blog on @PearlPoint has tips for you to share your #familyhealthhistory https://t.co/DR2P3XsZx8 https://t.co/QLOX0VlPiC
- we did a #family #bulletin email. For immediate family we had a get together https://t.co/obGa83KFTr
- Find out what tests will help, and if there is any specialized treatment, before scaring yourself or others with yr Dx.
- Sharing Genetic Testing is covered with CGC'S Certified Genetic Counselor they have templates for letters & conversations
- I encourage families to share information to help protect health. Sharing empowers relatives.
If you would like to continue this discussion, feel free to join us on Smart Patients at https://www.smartpatients.com/gyncsm.
Be sure to mark your calendar for our next chat on Wednesday, April 10 at 9pm ET as we discuss Re-envisioning Ovarian Cancer Survivorship. Our guests will be Dr. Don S. Dizon (@drdonsdizon) and Dr. Teresa Hagan ( @TLHagan). We hope to see you then.
Dee
#gyncsm co-moderator
RESOURCES:
Find a Genetic Counselor near you at https://t.co/JHZReh6ReE
@GeneticCouns blog will help you prepare for a genetic counseling visit. https://t.co/murxf0ekQH
Is Genetic Testing Necessary- http://www.bustle.com/articles/146564-is-cancer-genetic-testing-necessary-7-things-you-should-know-about-getting-a-screening
@BeBrightPink Collect Family History https://t.co/S8JvCebcpE
SGO position statements on genetic testing https://www.sgo.org/newsroom/position-statements-2/genetic-testing-for-gynecologic-cancer/
Surgeon General's Family Health History Initiative https://t.co/0ynYRl339L
Genetic Discrimination information https://t.co/xJhGNF7VnZ
GENETIC TESTING, PRIVACY AND DISCRIMINATION https://t.co/x2Z1aTACg1
https://t.co/o8hs49pDGn genetic discrimination laws and protections
OCS:Development of the Risk of Ovarian Cancer Algorithm and RoOCA Screening Trials http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3572791/
Hereditary cancer risk resources: @FacingOurRisk @BeBrightPink @Sharsheret @Hc_chat @BRCAinfo @BRCAresponder
Communicating genetic test results: https://t.co/waFU48JsXi
After receiving +test results https://t.co/ROLi0rlFbc via Cancer Communication Research University of South Florida
Oct 9,2013 Genetics and Personalized Medicine Chat https://t.co/T0ZjaCI4Bg
Genetic Counseling - Understanding Genetics - NCBI Bookshelf https://t.co/Zi3UwQpRoE
Genetic Counseling Infographic https://t.co/SZKjfF1caj
