To conclude Lynch Syndrome and Colorectal Cancer Awareness Month, we held a tweetchat, #GenCSM, with our phenomenal co-hosts Georgia Hurst and Amy Byer Shainman and special guest Heather Hampel, MS, LGC. Hampel is a genetic counselor at The Ohio State University Comprehensive Cancer Center. Her research interests include screening all colorectal and endometrial cancer patients for Lynch syndrome. Here are highlights from our exciting and thought-provoking chat! You can also view the full transcript here, (thanks Amy Byer Shainman for compiling).
#GenCSM @HHampel1: Q1 What are the most important things you’d like people to know about #ColonCancer this month?
— #GenCSM (@GenC_SM) March 27, 2017
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@GenC_SM #GenCSM Q1: 1/5 #ColorectalCancer is largely #preventable as long as you start your #colonoscopies at the right age &
— Heather Hampel (@HHampel1) March 27, 2017
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@GenC_SM #GenCSM Q1: 2/5…get them frequently enough. Approx 10% of all #colorectalcancers are hereditary,
— Heather Hampel (@HHampel1) March 27, 2017
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@GenC_SM #GenCSM Q1: 3/5…meaning that they are caused by a #mutation, causing an increased risk for #cancer.
— Heather Hampel (@HHampel1) March 27, 2017
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@GenC_SM #GenCSM Q1: 4/5 Knowing your #FamilyMedicalHistory of #ColorectalPolyps &
— Heather Hampel (@HHampel1) March 27, 2017
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@GenC_SM #GenCSM Q1: 5/5 #cancer can help determine when you need to start screening & how frequently to repeat screening.
— Heather Hampel (@HHampel1) March 27, 2017
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@HHampel1 #GenCSM: Q2: What are the 3 of most important things people need to know about #GeneticTesting for #ColonCancer?
— #GenCSM (@GenC_SM) March 27, 2017
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@GenC_SM #GenCSM Q2 1/5: #GeneticTesting for #HereditaryColorectalCancer has improved, more panels of #ColorectalCancer genes are available.
— Heather Hampel (@HHampel1) March 27, 2017
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#GenCSM Q2: 2/5 If you tested negative in the past but have a strong history of #cancer or #polyps, you may want to repeat your testing now.
— Heather Hampel (@HHampel1) March 27, 2017
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A2: Genetic testing is often covered for those with strong personal and/or family hx #GenCSM https://t.co/C9yWsIwXw6
— Ellen T. Matloff (@MyGeneCounsel) March 27, 2017
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#GenCSM Q2: Know your #FamilyMedicalHistory of #cancer, talk to your #GeneticCounselor to assess your risk, consider #GeneticTesting pic.twitter.com/6NtYhZcGYZ
— Invitae (@Invitae) March 27, 2017
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@HHampel1 #GenCSM Q3: What should people with #Lynchsyndrome consider doing on a regular basis to maintain their #health?
— #GenCSM (@GenC_SM) March 27, 2017
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@GenC_SM #GenCSM Q3: 2/7 Everyone, including people w/ #Lynch syndrome, should try to control their manageable risk factors by #NotSmoking..
— Heather Hampel (@HHampel1) March 27, 2017
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@GenC_SM #GenCSM Q3: 3/7 ..not drinking in excess, limiting #RedMeat, follow a #MediterraneanDiet, & by maintaining a #HealthyWeight.
— Heather Hampel (@HHampel1) March 27, 2017
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#GenCSM Q3: 5/7 The most important thing someone w/ #Lynchsyndrome can do is follow their #CancerScreening recommendations very carefully.
— Heather Hampel (@HHampel1) March 27, 2017
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#GenCSM Q3: 6/7 Colorectal cancers develop much more quickly in people w/ Lynch syndrome so they really have to get their colonoscopies….
— Heather Hampel (@HHampel1) March 27, 2017
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@GenC_SM #GenCSM Q3: 7/7 …every 1-2 years, even if they haven’t had a #polyp for a long time.
— Heather Hampel (@HHampel1) March 27, 2017
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@HHampel1
#GenCSM Q4: How can people with #Lynchsyndrome optimize the effectiveness of their colonoscopies?— #GenCSM (@GenC_SM) March 27, 2017
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@GenC_SM #GenCSM Q4: 3/3 Remind their gastroenterologist that they have Lynch syndrome and are at high risk right before their procedure.
— Heather Hampel (@HHampel1) March 27, 2017
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@HHampel1 #GenCSM Q5: Who qualifies for #GeneticCounseling for #HereditaryColonCancerSyndromes?
— #GenCSM (@GenC_SM) March 27, 2017
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#GenCSM Q5: 1/8 Anyone with #colorectal, #gastric or #endometrial cancer #UnderAge50 should consider having #CancerGeneticCounseling.
— Heather Hampel (@HHampel1) March 27, 2017
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#GenCSM Q5: 2/8 Anyone with three cases of #colorectal, #endometrial, #ovarian, or #stomach cancer on the same side of their family …
— Heather Hampel (@HHampel1) March 28, 2017
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#GenCSM Q5: 3/8 should consider #CancerGeneticCounseling.
— Heather Hampel (@HHampel1) March 27, 2017
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#GenCSM Q5: 4/8 Anyone with more than one primary #ColorectalCancer, or #endometrial, #ovarian, #stomach, or #urinarytract cancer…
— Heather Hampel (@HHampel1) March 27, 2017
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#GenCSM Q5: 5/8 should consider having #CertifiedGeneticCounseling.
— Heather Hampel (@HHampel1) March 27, 2017
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#GenCSM Q5: 6/8 Anyone w/ an abnormal screening test (MSI or IHC) on their #colorectal or #EndometrialCancer, or…
— Heather Hampel (@HHampel1) March 27, 2017
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#GenCSM Q5: 7/8 …a #FamilyMedicalHistory of an #HereditaryCancerSyndrome should consider having #CertifiedGeneticCounseling.…
— Heather Hampel (@HHampel1) March 27, 2017
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#GenCSM Q5: 8/8 & or a known genetic mutation (e.g., #MSH2, #APC, #PTEN) in their family should consider having #CertifiedGeneticCounseling
— Heather Hampel (@HHampel1) March 27, 2017
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@HHampel1: #GenCSM Q6: Aside from #ColonCancer, what should people look for in their #FamilyMedicalHistories?
— #GenCSM (@GenC_SM) March 27, 2017
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#GenCSM Q6: 1/5 Aside from #ColonCancer, people should look for anyone who has had 10 or more #ColorectalPolyps in their family.
— Heather Hampel (@HHampel1) March 27, 2017
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#GenCSM Q6: 2/5 This could be a sign of a #HereditaryPolyposisSyndrome.
— Heather Hampel (@HHampel1) March 27, 2017
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The conversation then opened up for participants to ask Heather Hampel questions and highlight important hereditary cancer points.
@HealioGastro You’re right – we think 95% of individuals with #Lynchsyndrome are not aware of their diagnosis. #GenCSM
— Heather Hampel (@HHampel1) March 27, 2017
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@ZHeatherChamp Agree! Cowden syndrome is also really underdiagnosed. We have to raise awareness. #GenCSM
— Heather Hampel (@HHampel1) March 27, 2017
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@MyGeneCounsel For CRC dx <50 with MSI-high tumors, the likelihood of testing positive was 83%. #GenCSM
— Heather Hampel (@HHampel1) March 27, 2017
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@tamiarnold1 Your team will need to make personalized recommendations for you since you are a CRC survivor and have a #PTEN mutation.#GenCSM
— Heather Hampel (@HHampel1) March 27, 2017
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@HHampel1 If a person w colon ca has strong fam hx of disease, should they still do MSI/IHC, or straight to genetic couns/testing? #GenCSM
— Ellen T. Matloff (@MyGeneCounsel) March 27, 2017
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@elisabethcramer @MyGeneCounsel Agreed – those w/colorectal cancer recently should ask your doctor if they had MSI testing. #GenCSM
— Heather Hampel (@HHampel1) March 27, 2017
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Have a question or comment you didn’t get to contribute? Please post in the comments below or tweet your response with #GenCSM. Check back for our next tweetchat; we host every two months! While you wait, check out our highlights of previous tweetchats.
Don’t forget to follow us on Twitter and Facebook to receive notifications about upcoming discussions and other news. Also please follow our co-hosts @Shewithlynch and @BRCAresponder and our guest, @HHampel1.