March Chat Genetic Counselors and Gynecologic Cancer Risk

"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: Who should consider genetic testing? How does it help those already diagnosed w/ a GYN cancer? Does it impact treatment plans?

• 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.

T2b: Have you had genetic testing? What influenced your decision? If yes, did you have a genetic counselor?

• 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: Which genetic mutations are known to increase risk for gyn cancers? Do these mutations also impact risks for other cancers?

• 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

T4a: How can people access genetic counseling? What prep work is needed? Are referrals required?

• 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.

T4b: Does insurance cover genetic counseling? Are there protections against discrimination based on genetic test results?

• 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. 

T5a: Let's talk about the term "risk". If mutations are found that increase my cancer risk, what does that really mean for me?

• 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

T6: Where can those with a genetic mutation find the latest info and get help weighing options for preventative action or treatment?

• @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!

T7: How and when to share test results with family can be tough. What are some tips?

• 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 

@ShewithLynch @MyGeneCounsel @LguzzardiM 

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 Testing and Ovarian Cancer  #gyncsm Community: https://t.co/uMVhorzjFa 

Genetic Counseling - Understanding Genetics - NCBI Bookshelf  https://t.co/Zi3UwQpRoE

Genetic Counseling Infographic  https://t.co/SZKjfF1caj