On Monday night we held a Tweetchat with our amazing co-hosts Georgia Hurst and Amy Byer Shainman and special guest Erica Ramos, Genetic Counselor at Illumina and President-Elect of the National Society of Genetic Counselors. Here are highlights from the exciting chat! You can also view the full transcript here.
#GenCSM starts NOW! pic.twitter.com/xo1DEAC3qY
— #GenCSM (@GenC_SM) August 22, 2016
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#GenCSM! pic.twitter.com/pDkarfBK8t
— #GenCSM (@GenC_SM) August 22, 2016
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#GenCSM! pic.twitter.com/lJs70OXAiI
— #GenCSM (@GenC_SM) August 22, 2016
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#GenCSM! pic.twitter.com/hrDt0JGyXj
— #GenCSM (@GenC_SM) August 22, 2016
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#GenCSM! #SpecialGuest @ERamosSD @GeneticCouns pic.twitter.com/04EFnDMqrx
— #GenCSM (@GenC_SM) August 22, 2016
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#GenCSM Thrilled to be here & support the #GenCSM rockstar advocates #hereditarycancer @BRCAresponder @ShewithLynch @MyGeneCounsel
— Lisa M Guzzardi, RN (@LguzzardiM) August 22, 2016
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Thanks for joining us, @westr !
— Ellen T. Matloff (@MyGeneCounsel) August 22, 2016
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#GenCSM Q1: How did you find out you carried a #HereditaryCancerSyndrome, #GeneticMutation?
— #GenCSM (@GenC_SM) August 22, 2016
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A1 #GenCSM Underwent #geneticcounseling & #genetictesting in ’09 after my sis was dx w/#ovariancancer & #uterinecancer & tested.
— Amy Byer Shainman (@BRCAresponder) August 22, 2016
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Q1 Found out after my cancer dx #gencsm
— Nancy’s Point (@NancysPoint) August 22, 2016
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Q1 found out after #coloncancer and subsequent #genetic testing and counseling at Sinai #GenCSM
— AliveAndKickn (@AliveAndKicknDD) August 22, 2016
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#GenCSM #Pros of #GeneticTesting pic.twitter.com/pqfJfEGoDx
— #GenCSM (@GenC_SM) August 22, 2016
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#Cons of #GeneticTesting #GenCSM pic.twitter.com/po9uStoBXi
— #GenCSM (@GenC_SM) August 22, 2016
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@MyGeneCounsel @GenC_SM I lot of preconceived notions about patients from certain backgrounds, I believe. I’m trying to change this #GenCSM
— ShereeseM, MS/MBA (@ShereesePubHlth) August 22, 2016
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#GenCSM Q2: Is there anything stopping you from finding out if you carry a #HereditaryCancer Syndrome?
— #GenCSM (@GenC_SM) August 22, 2016
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#A2 Several relatives to anxious ? #GenCSM https://t.co/hkQwPT12hQ
— Lee (@NJIvorygirl) August 22, 2016
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@GenC_SM Q2: @ERamosSD , what do you find are some of the common things stopping patients from #genetictesting ?
— Ellen T. Matloff (@MyGeneCounsel) August 22, 2016
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Fear of losing insurance, anxiety about positive result, concerns about cost. A #geneticcounselor can help! #GenCSM https://t.co/hHb5WGenrW
— Erica Ramos (@ERamosSD) August 22, 2016
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#GeneticTesting #CertifiedGeneticCounselors #GeneticTesting #GenCSM pic.twitter.com/yPyaPb58WI
— #GenCSM (@GenC_SM) August 22, 2016
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#GenCSM #GeneticTestingLabs #FreeTheData pic.twitter.com/CxAoBXdpe6
— #GenCSM (@GenC_SM) August 22, 2016
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#GenCSM Q3: How did you feel when you found out you were negative for a #mutation?
— #GenCSM (@GenC_SM) August 22, 2016
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#Myths regarding #GeneticTesting #GenCSM pic.twitter.com/yZnTd1UgId
— #GenCSM (@GenC_SM) August 22, 2016
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@ShereesePubHlth @VeritasGenetics @IrinaBrooke1 More affordable sequencing = more people with access. We learn a lot that way! #GenCSM
— Erica Ramos (@ERamosSD) August 23, 2016
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#GenCSM #Myths surrounding #GeneticTesting pic.twitter.com/HO4vkTlJ0N
— #GenCSM (@GenC_SM) August 22, 2016
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This is big deal! RT @ERamosSD: Great point! Adoption in family history can mask important information. Must be considered in eval #GenCSM
— Nancy’s Point (@NancysPoint) August 23, 2016
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#GenCSM Q4: How did you feel when you found out you tested postive for your #mutation?
— #GenCSM (@GenC_SM) August 22, 2016
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@GenC_SM Q4 I was not surprised at all. I already got bc and I am Ashkenazi Jewish. #BRCA2+
— Mutant Strong (@IrinaBrooke1) August 22, 2016
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A4 #GenCSM Didn’t know how to feel initially. Didn’t know enough. Went to high risk oncologist & that is when I felt hit by a truck! #BRCA
— Amy Byer Shainman (@BRCAresponder) August 22, 2016
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#GenCSM Q5: Do you know your cancer risks and what #cancer risk reduction options/screenings/surveillances have you chosen?
— #GenCSM (@GenC_SM) August 22, 2016
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,@NJIvorygirl Its important to form collaborative relationships w/ Drs. The Patient narrative begins & ends w/ the patient #GenCSM
— ShereeseM, MS/MBA (@ShereesePubHlth) August 23, 2016
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@ERamosSD Patients are regarded as #CitizenScientists vs Genetic couns who incorp knowledge, guidance, & social determinants/health #GenCSM
— ShereeseM, MS/MBA (@ShereesePubHlth) August 23, 2016
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#GenCSM Q6: If you have undergone any prophylactic surgeries, what health screenings do you still undergo?
— #GenCSM (@GenC_SM) August 22, 2016
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@BRCAresponder #GenCSM A6 #Phew It is still exhausting!
Not to mention monitoring #hormones #menopause #hotflashes— Amy Byer Shainman (@BRCAresponder) August 23, 2016
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CDC info to help women learn the basics about hereditary breast & ovarian cancer. https://t.co/clGPyozoa5 #GenCSM pic.twitter.com/mcizWeTyNa
— Dr. Muin Khoury (@DrKhouryCDC) August 23, 2016
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Great question! RT @GenC_SM: #GenCSM Q7: What do you want others to know about what’s it’s like have a #HereditaryCancerSyndrome?
— Nancy’s Point (@NancysPoint) August 23, 2016
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A7 I want others to know decisions are still yours to make if you should test + regarding prophylactic measures etc #gencsm
— Nancy’s Point (@NancysPoint) August 23, 2016
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Thanks @NancysPoint. This is the absolute definition of personalized medicine! Right test, right time. 🙂#GenCSM https://t.co/1nZVfJ6uJO
— Erica Ramos (@ERamosSD) August 23, 2016
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@AliveAndKicknDD …and get #CertifiedGeneticCounseling and doctors well-versed in #Lynchsyndrome screening…#GenCSM
— #GenCSM (@GenC_SM) August 23, 2016
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A7: If you are considering testing, meet with a @GeneticCouns to assess your inherited risk and select the most appropriate test. #GenCSM
— Erica Ramos (@ERamosSD) August 23, 2016
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Why genetic counseling is crucial before & after genetic testing. Via @ShewithLynch. https://t.co/apigLbYQ41 #GenCSM pic.twitter.com/IJkstMRGkC
— Dr. Muin Khoury (@DrKhouryCDC) August 23, 2016
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@westr, make sure gc is ABGC board eligible/certified. Many claim they ‘do genetic counseling’, w/o creds.@ShereesePubHlth @GenC_SM
— Ellen T. Matloff (@MyGeneCounsel) August 23, 2016
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Yes! Some states also license genetic counselors & https://t.co/fWM0J8AGnK can help you find 1 in your area. #GenCSM https://t.co/p0yF4z9Cjd
— Erica Ramos (@ERamosSD) August 23, 2016
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#GenCSM Q8: Today I learned on #GenCSM….
— #GenCSM (@GenC_SM) August 23, 2016
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A8: We all feel the same way. #GenCSM Sometimes on top & fear of missing something but part of a great team! #GenCSM https://t.co/HrqvbZwih6
— Lee (@NJIvorygirl) August 23, 2016
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Agree @ERamosSD Most immediate & impactful action we can take is get screened – women & men #GenCSM https://t.co/dQxoKn9OCe
— Rodrigo Martinez (@RodrigoATCG) August 23, 2016
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Q8 #GenCSM https://t.co/7fS6mAwyuQ#tonight I #Learned There may still be more questions than answers but there are phenomenal #resources
— Amy Byer Shainman (@BRCAresponder) August 23, 2016
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A8 – The power of community. Thank you to all #GenCSM participants for sharing your knowledge! https://t.co/cnln8T31hA
— Erica Ramos (@ERamosSD) August 23, 2016
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A8: we have a great community of GC’s, medical professionals / MDs & amazing advocates and survivors at #GenCSM! https://t.co/nTXTnhNWxi
— Erica Bednar (@EMBOSU) August 23, 2016
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#GenCSM #A8 The Twitter #HereditaryCancer community is fantastic and very supportive.
— Georgia Hurst (@ShewithLynch) August 23, 2016
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This was very insightful. Thx again for the invite. I hope to run into you thru social or on the front lines #GenCSM pic.twitter.com/B9MMpZI5bl
— ShereeseM, MS/MBA (@ShereesePubHlth) August 23, 2016
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#GenCSM pic.twitter.com/9QkxmSWa3f
— #GenCSM (@GenC_SM) August 23, 2016
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#Boom! @VP #Genomics
Gratitude to our new followers on #GenCSM!
We reached over 7 million people today on Twitter with our latest chat!— #GenCSM (@GenC_SM) August 23, 2016