Wednesday, March 9, 2016

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 RiskWe 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:
  • 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?
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.
  • 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?

If you would like to continue this discussion, feel free to join us on Smart Patients at

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.

#gyncsm co-moderator

Find a Genetic Counselor near you at

@GeneticCouns blog will help you prepare for a genetic counseling visit.

@BeBrightPink Collect Family History

SGO position statements on genetic testing

Surgeon General's Family Health History Initiative

Genetic Discrimination information 

GENETIC TESTING, PRIVACY AND DISCRIMINATION genetic discrimination laws and protections

OCS:Development of the Risk of Ovarian Cancer Algorithm and RoOCA Screening Trials

Hereditary cancer risk resources: @FacingOurRisk @BeBrightPink @Sharsheret @Hc_chat @BRCAinfo @BRCAresponder 

Communicating genetic test results:

After receiving +test results via Cancer Communication Research University of South Florida 

Oct 9,2013 Genetics and Personalized Medicine Chat

Genetic Testing and Ovarian Cancer  #gyncsm Community: 

Genetic Counseling - Understanding Genetics - NCBI Bookshelf

Genetic Counseling Infographic 

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