#GynCSM Transcript
Healthcare social media transcript of the #GynCSM hashtag.
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See #GynCSM Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | GYN Cancer | #GYNCSM @gyncsm Welcome to #gyncsm - a passionate community of gynecologic cancer survivors, caregivers, advocates and health care providers. |
| GYN Cancer | #GYNCSM @gyncsm Our co-moderators are @womenofteal @btrfly12 Our health care moderators are @ShannonWestin @temkins @journeycancer and our mental health moderator @DrBeckerSchutte #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm We start out with brief intro’s - Please take a moment to introduce yourself. :) #gyncsm |
 | Dee Sparacio @womenofteal RT @gyncsm: We start out with brief intro’s - Please take a moment to introduce yourself. :) #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: Our co-moderators are @womenofteal @btrfly12 Our health care moderators are @ShannonWestin @temkins @journeycancer and our mental health moderator @DrBeckerSchutte #gyncsm |
 | Christina Lizaso @btrfly12 RT @gyncsm: Welcome to #gyncsm - a passionate community of gynecologic cancer survivors, caregivers, advocates and health care providers. |
| Dee Sparacio @womenofteal Dee here! Dx #ovca Stage3B 2005 with one recurrence , OC research advocate, blogger & co-moderator #gyncsm |
| Christina Lizaso @btrfly12 Christina Lizaso – passionate re: community engagement and cancer. I’ll be moderating as @gyncsm today. #gyncsm |
 | Tanya Temkin @tanyaltee Hi. Chiming in from Berkeley, CA. I volunteer with OCRA as well as FORCE. #gyncsm |
| Dee Sparacio @womenofteal @tanyaltee So glad to see you tonight! #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm If you prefer to listen only during the chat, we'd love for you to tweet "#gyncsm" when you join - just to let us know you are here. |
 | @FacingOurRisk @FacingOurRisk Hello. I'm Lisa Schlager. VP of Public Policy with @FORCE. #gyncsm |
| Dee Sparacio @womenofteal @FacingOurRisk We are so glad that you are able to join us tonight! #gyncsm |
 | Erica Bednar @EMBOSU Hi everyone! I'm Erica - Genetic Counselor at @MDAndersonNews focusing on hereditary gynecologic cancers #gyncsm #GCAM #Gencsm |
| GYN Cancer | #GYNCSM @gyncsm Please continue intro's & welcomes - we'll start in w/ the "ground rules" :) and tips! #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm The #gyncsm chat promotes community in a public forum. Learn more about risks/benefits: https://t.co/TipZUv1jQy |
| Dee Sparacio @womenofteal RT @gyncsm: The #gyncsm chat promotes community in a public forum. Learn more about risks/benefits: https://t.co/TipZUv1jQy |
| Dee Sparacio @womenofteal #gyncsm tagged resources and referrals are not a substitute for speaking with your doctor who understands your needs and history. |
| GYN Cancer | #GYNCSM @gyncsm Are you new to tweet chats? Follow hashtag #gyncsm and include it in every tweet during the next hour to engage with others about this topic. |
 | NCI Cancer Stats @NCICancerStats According to 2012-2016 data, #UterineCancer is most frequently diagnosed among women aged 55-64. Read the facts here: https://t.co/V9433PjGI5 #GynCSM https://t.co/BhfWBlh6gl |
| Dee Sparacio @womenofteal RT @gyncsm: Are you new to tweet chats? Follow hashtag #gyncsm and include it in every tweet during the next hour to engage with others about this topic. |
| Dee Sparacio @womenofteal Remember - Twitter is an open social network and posts are public. Use a Direct Messages to exchange email addresses/personal info #gyncsm |
 | IPDLN @IPDLN RT @NCICancerStats: According to 2012-2016 data, #UterineCancer is most frequently diagnosed among women aged 55-64. Read the facts here: According to 2012-2016 data, #UterineCancer is most frequently diagnosed among women aged 55-64. Read the facts here: https://t.co/V9433PjGI5 #GynCSM https://t.co/BhfWBlh6gl |
| Dee Sparacio @womenofteal RT @gyncsm: Welcome to our special guest and others joining along. We also welcome all those “listening in”. You can always tweet, DM or… |
| GYN Cancer | #GYNCSM @gyncsm Welcome to our special guests and others joining along. We also welcome all those “listening in”. You can always tweet, DM or email us with questions/comments after the chat is over. #gyncsm #gyncsm |
| Dee Sparacio @womenofteal Thank you to all who have tweeted during the past month with the #gyncsm hashtag and those who RT'd about this chat |
| Dee Sparacio @womenofteal This month is gyn cancer awareness month. Have you joined the #IWishIKnew campaign? You can hear from OC survivors about what they wish they had known before they were diagnosed. #gyncsm |
 | SHARE Cancer Support @SHARECancerSupt Hi this is Stephanie Blaufarb, Ovarian Cancer Program Director at SHARE. Happy to be here sharing info and links, and learning from others on this important topic for women facing breast and ovarian cancer #gyncsm Learn more about SHARE at https://t.co/u78nMdGerT |
| Tanya Temkin @tanyaltee RT @womenofteal: This month is gyn cancer awareness month. Have you joined the #IWishIKnew campaign? You can hear from OC survivors about what they wish they had known before they were diagnosed. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm Announcement - It is time for a survey of our #gyncsm community. We hope you will complete the survey at: https://t.co/7VNQdOVZGK so we can understand our community and support you with the topics that are most beneficial. |
| Dee Sparacio @womenofteal RT @gyncsm: Announcement - It is time for a survey of our #gyncsm community. We hope you will complete the survey at: https://t.co/7VNQdOVZGK so we can understand our community and support you with the topics that are most beneficial. |
| Dee Sparacio @womenofteal #gyncsm is happy to be celebrating 6 years as a community and chat! https://t.co/3mAsQVnq4m |
| Dee Sparacio @womenofteal @SHAREing Thank you so much Stephanie for joining us tonight. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm Tonight on #gyncsm we are discussing The Breast and Ovarian Cancer Connection. We are pleased to have FORCE @FacingOurRisk and @JoyLarsenHaidle from @GeneticCouns join us for this important discussion. |
 | Nancy's Point @NancysPoint Good evening, all. Nancy here. Blogger, author, advocate, brca2+, bc dx in 2010. Impt topic tonight. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: Tonight on #gyncsm we are discussing The Breast and Ovarian Cancer Connection. We are pleased to have FORCE @FacingOurRisk and @JoyLarsenHaidle from @GeneticCouns join us for this important discussion. |
| Dee Sparacio @womenofteal @NancysPoint Hello Nancy. Thanks so much for stopping by tonight! #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm We’ll use a Topic format with T1:, T2:, etc. Include the corresponding T1:, T2:, etc. at the front of your answer/comment. There are 5 #gyncsm Topic questions tonight (some with a part A and part B) followed by a Today I Learned (TIL:) segment. |
| Dee Sparacio @womenofteal RT @gyncsm: We’ll use a Topic format with T1:, T2:, etc. Include the corresponding T1:, T2:, etc. at the front of your answer/comment. There are 5 #gyncsm Topic questions tonight (some with a part A and part B) followed by a Today I Learned (TIL:) segment. |
| GYN Cancer | #GYNCSM @gyncsm You can find a list of the upcoming topic questions on our #gyncsm blog page: https://t.co/Sv1crbBdif |
| SHARE Cancer Support @SHARECancerSupt RT @gyncsm: The next #GYNCSM tweetchat is tonight, Wednesday, September 11th at 9pmET | 8pmCT | 6pmPT. The topic will be The Breast and Ovarian Cancer Connection. https://t.co/g0KXbzu5Rt https://t.co/X8pQONri5N |
| Nancy's Point @NancysPoint Congrats on the 6 yrs! RT @womenofteal: #gyncsm is happy to be celebrating 6 years as a community and chat! https://t.co/mLoCYEpIku |
| GYN Cancer | #GYNCSM @gyncsm T1A: What is hereditary breast and ovarian cancer (HBOC)? Which are the most commonly affected genes in HBOC? #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T1A: T1A: What is hereditary breast and ovarian cancer (HBOC)? Which are the most commonly affected genes in HBOC? #gyncsm |
| Christina Lizaso @btrfly12 RT @gyncsm: You can find a list of the upcoming topic questions on our #gyncsm blog page: You can find a list of the upcoming topic questions on our #gyncsm blog page: https://t.co/Sv1crbBdif |
| Christina Lizaso @btrfly12 RT @gyncsm: T1A: T1A: What is hereditary breast and ovarian cancer (HBOC)? Which are the most commonly affected genes in HBOC? #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: You can find a list of the upcoming topic questions on our #gyncsm blog page: You can find a list of the upcoming topic questions on our #gyncsm blog page: https://t.co/Sv1crbBdif |
| Christina Lizaso @btrfly12 RT @womenofteal: #gyncsm is happy to be celebrating 6 years as a community and chat! https://t.co/3mAsQVnq4m |
 | Genetic Counselors @GeneticCouns A1 HBOC means that there is an inherited risk factor that increases the chance of developing certain cancers over a lifetime such as breast & ovarian cancer. There are several breast/ovarian cancer genes; the most well known are BRCA1 & BRCA2. #gyncsm ^JLH |
| Christina Lizaso @btrfly12 RT @SHAREing: Hi this is Stephanie Blaufarb, Ovarian Cancer Program Director at SHARE. Happy to be here sharing info and links, and learning from others on this important topic for women facing breast and ovarian cancer #gyncsm Learn more about SHARE at https://t.co/u78nMdGerT |
| @FacingOurRisk @FacingOurRisk T1a Cancers that occur because of an inherited genetic mutation are hereditary cancers or HBOC. Cancers that are not due to a hereditary gene change are called sporadic cancer. #gyncsm |
| Dee Sparacio @womenofteal If you are listening in feel free to just tweet #gyncsm so we know you are here. |
| Christina Lizaso @btrfly12 RT @GeneticCouns: A1 HBOC means that there is an inherited risk factor that increases the chance of developing certain cancers over a lifetime such as breast & ovarian cancer. There are several breast/ovarian cancer genes; the most well known are BRCA1 & BRCA2. #gyncsm ^JLH |
| Genetic Counselors @GeneticCouns A1 The chance of developing cancer over a lifetime varies depending on the gene & by gender. Remember inherited cancer predisposition may be inherited from men just as likely as w/ women. Don’t forget the guys in the family! Men have an increased cancer risk too. #gyncsm ^JLH |
| Christina Lizaso @btrfly12 RT @FacingOurRisk: T1a Cancers that occur because of an inherited genetic mutation are hereditary cancers or HBOC. Cancers that are not due to a hereditary gene change are called sporadic cancer. #gyncsm |
| @FacingOurRisk @FacingOurRisk T1a Red flags of HBOC include ovarian, early onset breast, male breast, pancreatic or prostate cancer. Also, multiple family members w/cancer and/or Ashkenazi Jewish ancestry. #gyncsm |
| Dee Sparacio @womenofteal RT @GeneticCouns: A1 HBOC means that there is an inherited risk factor that increases the chance of developing certain cancers over a lifetime such as breast & ovarian cancer. There are several breast/ovarian cancer genes; the most well known are BRCA1 & BRCA2. #gyncsm ^JLH |
| Christina Lizaso @btrfly12 RT @GeneticCouns: A1 The chance of developing cancer over a lifetime varies depending on the gene & by gender. Remember inherited cancer predisposition may be inherited from men just as likely as w/ women. Don’t forget the guys in the family! Men have an increased cancer risk too. #gyncsm ^JLH |
| Dee Sparacio @womenofteal RT @FacingOurRisk: T1a Cancers that occur because of an inherited genetic mutation are hereditary cancers or HBOC. Cancers that are not due to a hereditary gene change are called sporadic cancer. #gyncsm |
| Christina Lizaso @btrfly12 RT @FacingOurRisk: T1a Red flags of HBOC include ovarian, early onset breast, male breast, pancreatic or prostate cancer. Also, multiple family members w/cancer and/or Ashkenazi Jewish ancestry. #gyncsm |
| Dee Sparacio @womenofteal Important to remember the men in your family. |
| @FacingOurRisk @FacingOurRisk A1a BRCA1/2, PALB2, ATM, and CHEK2 are commonly affected genes in HBOC. #gyncsm |
 | Ironwood Cancer & Research Centers @IronwoodCancer RT @CDC_Cancer: Uterine cancer, the most common cancer of the female reproductive system, is on the rise. Learn how you can prevent it, and the symptoms to look for from @CDCMMWR: https://t.co/yZ6RMTa7VS #gyncsm #GynecologicCancerAwarenessMonth https://t.co/HWgaf0fDrv |
| Dee Sparacio @womenofteal RT @FacingOurRisk: A1a BRCA1/2, PALB2, ATM, and CHEK2 are commonly affected genes in HBOC. #gyncsm |
| Dee Sparacio @womenofteal @FacingOurRisk Do you consider early onset early than 40 years old? #gyncsm |
| @FacingOurRisk @FacingOurRisk A1a Other genes related 2 HBOC include BARD1, BRIP1, RAD51C, RAD51D, EPCAM, CDH1, CHEK2, NBN, MLH1, MSH2, MSH6, PMS2, NF1, PMS2, PTEN, STK11, TP53 #gyncsm |
| Dee Sparacio @womenofteal RT @FacingOurRisk: A1a Other genes related 2 HBOC include BARD1, BRIP1, RAD51C, RAD51D, EPCAM, CDH1, CHEK2, NBN, MLH1, MSH2, MSH6, PMS2, NF1, PMS2, PTEN, STK11, TP53 #gyncsm |
| @FacingOurRisk @FacingOurRisk A1 Check out the @FORCE website for a table of genes associated with hereditary cancer by cancer type. #gyncsm https://t.co/HPsGkQ6krd |
| Christina Lizaso @btrfly12 CHEK2 mutation - that's me Plenty of breast, pancreas and other cancers in the family led us to believe there was a hereditary mutation involved. #gyncsm |
| Genetic Counselors @GeneticCouns A1 Several genes. Some strong risk factors. Others medium risk. Newer genes called preliminary evidence which may be marker to follow in family but not enough data to use in medical decisions. Talk to a GC to determine best option for you. ^JLH #gyncsm |
| Nancy's Point @NancysPoint RT @FacingOurRisk: A1a BRCA1/2, PALB2, ATM, and CHEK2 are commonly affected genes in HBOC. #gyncsm |
| Christina Lizaso @btrfly12 RT @FacingOurRisk: A1 Check out the @FORCE website for a table of genes associated with hereditary cancer by cancer type. #gyncsm https://t.co/HPsGkQ6krd |
| SHARE Cancer Support @SHARECancerSupt RT @gyncsm: Welcome to #gyncsm - a passionate community of gynecologic cancer survivors, caregivers, advocates and health care providers. |
| Dee Sparacio @womenofteal RT @GeneticCouns: A1 Several genes. Some strong risk factors. Others medium risk. Newer genes called preliminary evidence which may be marker to follow in family but not enough data to use in medical decisions. Talk to a GC to determine best option for you. ^JLH #gyncsm |
| Dee Sparacio @womenofteal RT @FacingOurRisk: A1 Check out the @FORCE website for a table of genes associated with hereditary cancer by cancer type. #gyncsm https://t.co/HPsGkQ6krd |
| GYN Cancer | #GYNCSM @gyncsm T1B: What information do genetic counselors need to determine risk and the need for women to be tested? #gyncsm |
| Genetic Counselors @GeneticCouns Most guidelines consider early age as 50 or under. ^JLH #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T1B: T1B: What information do genetic counselors need to determine risk and the need for women to be tested? #gyncsm |
| Dee Sparacio @womenofteal RT @GeneticCouns: Most guidelines consider early age as 50 or under. ^JLH #gyncsm |
| Ironwood Cancer & Research Centers @IronwoodCancer RT @CDC_Cancer: Stay on top of your health this #GynecologicCancerAwarenessMonth! If you're aged 21 to 65, get a Pap or HPV test (or a combination of both) regularly to help prevent cervical cancer. Learn about your screening options: https://t.co/vRUcBfATyJ #gyncsm https://t.co/JCUpAtYZuD |
| Genetic Counselors @GeneticCouns A1B Talk with relatives to learn about the health problems that run in the family. For cancer, ask what type & age of onset. Ask if female relatives have had ovaries and/or uterus removed plus the age. Ask about colon polyps too. #gyncsm ^JLH |
| @FacingOurRisk @FacingOurRisk A1b Personal & family history of all cancers (2-3 generations) including type & age at diagnosis from the mother’s & father’s side of the family help determine risk & need for genetic testing. #gyncsm |
| Dee Sparacio @womenofteal RT @GeneticCouns: A1B Talk with relatives to learn about the health problems that run in the family. For cancer, ask what type & age of onset. Ask if female relatives have had ovaries and/or uterus removed plus the age. Ask about colon polyps too. #gyncsm ^JLH |
| Christina Lizaso @btrfly12 RT @GeneticCouns: A1 Several genes. Some strong risk factors. Others medium risk. Newer genes called preliminary evidence which may be marker to follow in family but not enough data to use in medical decisions. Talk to a GC to determine best option for you. ^JLH #gyncsm |
| Dee Sparacio @womenofteal RT @FacingOurRisk: A1b Personal & family history of all cancers (2-3 generations) including type & age at diagnosis from the mother’s & father’s side of the family help determine risk & need for genetic testing. #gyncsm |
| Erica Bednar @EMBOSU T1A: HBOC=inherited cancer predisposition: a genetic change someone was born w/ (inherited from a parent) that increases risk over a lifetime to develop specific cancers. Only 5-10% of cancers are hereditary (not very common)! #gyncsm |
| Genetic Counselors @GeneticCouns A1B Genetic testing is common now. Ask if relatives had genetic testing done & if they would share a copy of the results. Important to share information to help protect health! #gyncsm ^JLH |
| @FacingOurRisk @FacingOurRisk A1b People w/ Eastern European Jewish ancestry are 10 times more likely to carry a BRCA mutation than the average population. 1:40 vs. 1:400 people. #gyncsm |
| Dee Sparacio @womenofteal RT @FacingOurRisk: A1b People w/ Eastern European Jewish ancestry are 10 times more likely to carry a BRCA mutation than the average population. 1:40 vs. 1:400 people. #gyncsm |
| Christina Lizaso @btrfly12 It can take a little digging as some families don't talk of female cancers by name. There are some guides for having these sensitive conversations and starting to gather a good family history. #gyncsm |
| Tanya Temkin @tanyaltee Wish I’d known this years ago! #gyncsm |
 | Shannon Westin, MD, MPH, FASCO @ShannonWestin Hello all -sorry to be tardy! I'm a gyn onc from @mdandersonnews! #gyncsm |
| Christina Lizaso @btrfly12 RT @EMBOSU: T1A: HBOC=inherited cancer predisposition: T1A: HBOC=inherited cancer predisposition: a genetic change someone was born w/ (inherited from a parent) that increases risk over a lifetime to develop specific cancers. Only 5-10% of cancers are hereditary (not very common)! #gyncsm |
| Erica Bednar @EMBOSU T1B: Helpful to know family history of cancer (types of cancer, age at diagnosis) among male, female, close and distant relatives when possible. Sometimes a cancer diagnosis alone meets criteria for genetic testing recommendations (ex: epithelial ovarian cancer) #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T2A: What % of women diagnosed with breast cancer have these mutations? What % with ovarian cancer have these mutations? #gyncsm |
| Genetic Counselors @GeneticCouns @btrfly12 Agree. "Female" cancers often kept quiet or referenced as "stomach cancer" because it was more socially proper to reference. #gyncsm ^JLH |
| Nancy's Point @NancysPoint @tanyaltee Well, you know what they say about hindsight. #gyncsm |
| Shannon Westin, MD, MPH, FASCO @ShannonWestin T1B: For women with no hx of cancer, GC will be interested in family hx of cancer - which relatives, what cancer and how old at dx #gyncsm |
| Christina Lizaso @btrfly12 RT @GeneticCouns: @btrfly12 Agree. "Female" cancers often kept quiet or referenced as "stomach cancer" because it was more socially proper to reference. #gyncsm ^JLH |
| Dee Sparacio @womenofteal RT @gyncsm: T2A: T2A: What % of women diagnosed with breast cancer have these mutations? What % with ovarian cancer have these mutations? #gyncsm |
| Shannon Westin, MD, MPH, FASCO @ShannonWestin RT @GeneticCouns: Most guidelines consider early age as 50 or under. ^JLH #gyncsm |
| Christina Lizaso @btrfly12 RT @EMBOSU: T1B: T1B: Helpful to know family history of cancer (types of cancer, age at diagnosis) among male, female, close and distant relatives when possible. Sometimes a cancer diagnosis alone meets criteria for genetic testing recommendations (ex: epithelial ovarian cancer) #gyncsm |
| @FacingOurRisk @FacingOurRisk A2a An estimated 10% of #BC and 15-20% of #OVCA are due to an inherited genetic mutation. These numbers are higher in certain populations. #gyncsm |
 | Amy Byer Shainman @BRCAresponder RT @GeneticCouns: A1 The chance of developing cancer over a lifetime varies depending on the gene & by gender. Remember inherited cancer predisposition may be inherited from men just as likely as w/ women. Don’t forget the guys in the family! Men have an increased cancer risk too. #gyncsm ^JLH |
| Dee Sparacio @womenofteal RT @FacingOurRisk: A2a An estimated 10% of #BC and 15-20% of #OVCA are due to an inherited genetic mutation. These numbers are higher in certain populations. #gyncsm |
| Genetic Counselors @GeneticCouns A2A Up to 10% of women w/ #BC have a strong inherited risk factor. Another 20% of women w/ #BC may have a moderate risk cancer gene. For #ovca, up to 25% of women have an underlying inherited risk. Important to see a GC for a risk assessment & consider testing. #gyncsm ^JLH |
| Genetic Counselors @GeneticCouns A2A All women w/ #ovca fallopian tube cancer & primary peritoneal cancer are candidates for genetic testing. May help with treatment options. May help family members too. #gyncsm ^JLH |
| Dee Sparacio @womenofteal @GeneticCouns What is considered a moderate risk cancer gene? #gyncsm |
| Dee Sparacio @womenofteal RT @GeneticCouns: A2A All women w/ #ovca fallopian tube cancer & primary peritoneal cancer are candidates for genetic testing. May help with treatment options. May help family members too. #gyncsm ^JLH |
| GYN Cancer | #GYNCSM @gyncsm T2B: Has the number of prophylactic surgeries (surgeries before cancer develops) increased in the past 10 years? Have celebrity stories about their surgeries helped or hindered from your perspective? #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T2B: T2B: Has the number of prophylactic surgeries (surgeries before cancer develops) increased in the past 10 years? Have celebrity stories about their surgeries helped or hindered from your perspective? #gyncsm |
| Genetic Counselors @GeneticCouns @womenofteal Moderate risk genes suggest lifetime chance of breast cancer in the range of 20-40% vs stronger genes tend to be in the range of 50-85% lifetime risk. #gyncsm ^JLH |
| Erica Bednar @EMBOSU T1A: Studies estimate that 10-20% of epithelial ovarian cancers are hereditary, mostly due to an inherited mutation in BRCA1 or BRCA2 genes. If you have been diagnosed w/ epithelial ovarian cancer you meet US guidelines for testing BRCA1/2 for inherited mutations #gyncsm #gencsm |
| Genetic Counselors @GeneticCouns A2B Celebrity stories created awareness & conversation about options for risk reduction. Words used to describe mastectomy have changed to be more accepting & supportive than past years. #gyncsm ^JLH |
| Dee Sparacio @womenofteal @GeneticCouns So it is not necessarily women who have a BRCA mutation versus those with the other mutations CHECK, NF1, PALB #gyncsm |
| Dee Sparacio @womenofteal RT @GeneticCouns: A2B Celebrity stories created awareness & conversation about options for risk reduction. Words used to describe mastectomy have changed to be more accepting & supportive than past years. #gyncsm ^JLH |
| Christina Lizaso @btrfly12 With my mutation/sub-type and family history, I'm somewhere in the 40-50% range for breast cancer. Colon and other cancers there really isn't enough data to give it a range is my understanding. #gyncsm |
 | Lisa M Guzzardi, RN @LguzzardiM @GeneticCouns Genetic testing needs to be standard of care for all women with ovca, primary peritoneal, & fallopian tubal cancers. Not all healthcare providers are aware. #gyncsm |
| Genetic Counselors @GeneticCouns Surgical decisions personal & may be influenced by cancer experience in family. Have seen more women ask about bilateral mastectomy in recent to explore all options. #gyncsm ^JLH |
| @FacingOurRisk @FacingOurRisk @GeneticCouns @womenofteal Important to differentiate. Not all gene mutations are considered "high risk." Recommended interventions vary based on estimated risk. #gyncsm |
| Christina Lizaso @btrfly12 RT @EMBOSU: T1A: T1A: Studies estimate that 10-20% of epithelial ovarian cancers are hereditary, mostly due to an inherited mutation in BRCA1 or BRCA2 genes. If you have been diagnosed w/ epithelial ovarian cancer you meet US guidelines for testing BRCA1/2 for inherited mutations #gyncsm #gencsm |
| Dee Sparacio @womenofteal RT @GeneticCouns: Surgical decisions personal & may be influenced by cancer experience in family. Have seen more women ask about bilateral mastectomy in recent to explore all options. #gyncsm ^JLH |
| Dee Sparacio @womenofteal RT @FacingOurRisk: @GeneticCouns @womenofteal Important to differentiate. Not all gene mutations are considered "high risk." Recommended interventions vary based on estimated risk. #gyncsm |
| Genetic Counselors @GeneticCouns Most genes have jobs to do in more than one part of the body. Important to meet with genetic expert (GC) to learn details about the gene and cancer risks so can have detailed discussion about surveillance options with your doctor. #gyncsm ^JLH |
| Erica Bednar @EMBOSU T2A: certain types of breast & ovarian cancer have higher % chance of having a hereditary cause such as triple-negative breast cancer (especially if diagnosed before 60yo) & high-grade serous ovarian cancer. A genetic counselor can help assess your risk #gyncsm #bcsm #gencsm |
| Dee Sparacio @womenofteal I agree 100%. And we need to make those physicians more aware. #gyncsm |
| Dee Sparacio @womenofteal RT @GeneticCouns: Most genes have jobs to do in more than one part of the body. Important to meet with genetic expert (GC) to learn details about the gene and cancer risks so can have detailed discussion about surveillance options with your doctor. #gyncsm ^JLH |
| SHARE Cancer Support @SHARECancerSupt RT @FacingOurRisk: A2a An estimated 10% of #BC and 15-20% of #OVCA are due to an inherited genetic mutation. These numbers are higher in certain populations. #gyncsm |
| Christina Lizaso @btrfly12 It is all very technical and the data/science is constantly evolving. That makes me worry about people misunderstanding results with testing that does not include thorough genetic counseling. #gyncsm |
| @FacingOurRisk @FacingOurRisk A2b Genetic testing has increased & national guidelines support risk-reducing surgery for those w/certain mutations so it follows that the numbers of prophylactic surgeries have increased. #gyncsm |
| SHARE Cancer Support @SHARECancerSupt RT @GeneticCouns: A2A All women w/ #ovca fallopian tube cancer & primary peritoneal cancer are candidates for genetic testing. May help with treatment options. May help family members too. #gyncsm ^JLH |
| Genetic Counselors @GeneticCouns @womenofteal Genes have overlapping cancer risks so it is not BRCA1/2 versus all the other genes. e.g. PALB2 breast cancer risk can overlap estimates with BRCA2. #gyncsm ^JLH |
| Lisa M Guzzardi, RN @LguzzardiM RT @btrfly12: It is all very technical and the data/science is constantly evolving. That makes me worry about people misunderstanding results with testing that does not include thorough genetic counseling. #gyncsm |
| Dee Sparacio @womenofteal #gyncsm |
| Dee Sparacio @womenofteal RT @FacingOurRisk: A2b Genetic testing has increased & national guidelines support risk-reducing surgery for those w/certain mutations so it follows that the numbers of prophylactic surgeries have increased. #gyncsm |
| Christina Lizaso @btrfly12 Reminder that testing positive for a high-risk genetic mutation does not mean you will definitely get cancer. It does help you be empowered in your healthcare decisions. #gyncsm |
| @FacingOurRisk @FacingOurRisk @btrfly12 Agreed! The field of genetics is changing rapidly. Genetic counselors & geneticists are most knowledgeable. Patients can connect w/them in person or by phone/Skype. #gyncsm https://t.co/scbhmTFw7L |
| Dee Sparacio @womenofteal This point of different risk factors make the roll of a genetic counselor key. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T3A: What options do women with a BRCA mutation (Previvors) have to reduce their risk of the diseases? How will the new USPSTF testing recommendations impact women? #gyncsm |
| Dee Sparacio @womenofteal RT @FacingOurRisk: @btrfly12 Agreed! The field of genetics is changing rapidly. Genetic counselors & geneticists are most knowledgeable. Patients can connect w/them in person or by phone/Skype. #gyncsm https://t.co/scbhmTFw7L |
| Dee Sparacio @womenofteal RT @gyncsm: T3A: What options do women with a BRCA mutation (Previvors) have to reduce their risk of the diseases? How will the new USPSTF testing recommendations impact women? #gyncsm |
| Erica Bednar @EMBOSU NCCN guidelines have recommended genetic testing in this population for many years, but clinical uptake has been slow. We're getting better -- increased awareness, new treatment implications (PARP), and more efforts to intentionally improve practice patterns helps! #gyncsm |
| SHARE Cancer Support @SHARECancerSupt RT @FacingOurRisk: @GeneticCouns @womenofteal Important to differentiate. Not all gene mutations are considered "high risk." Recommended interventions vary based on estimated risk. #gyncsm |
| @FacingOurRisk @FacingOurRisk A2b Celebrity stories have both helped & hindered genetic testing depending on the celebrity & the nature of the story. Angelina Jolie was probably the most positive & influential. #gyncsm |
| Christina Lizaso @btrfly12 RT @FacingOurRisk: @btrfly12 Agreed! The field of genetics is changing rapidly. Genetic counselors & geneticists are most knowledgeable. Patients can connect w/them in person or by phone/Skype. #gyncsm https://t.co/scbhmTFw7L |
| Dee Sparacio @womenofteal RT @EMBOSU: NCCN guidelines have recommended genetic testing in this population for many years, but clinical uptake has been slow. We're getting better -- increased awareness, new treatment implications (PARP), and more efforts to intentionally improve practice patterns helps! #gyncsm |
| @FacingOurRisk @FacingOurRisk A3: There are 3 main options to manage or reduce risk: increased screening, chemoprevention & risk-reducing surgery. #gyncsm https://t.co/AoKQ0eXDy4 |
| Christina Lizaso @btrfly12 RT @FacingOurRisk: A2b Genetic testing has increased & national guidelines support risk-reducing surgery for those w/certain mutations so it follows that the numbers of prophylactic surgeries have increased. #gyncsm |
| Dee Sparacio @womenofteal RT @FacingOurRisk: A3: There are 3 main options to manage or reduce risk: A3: There are 3 main options to manage or reduce risk: increased screening, chemoprevention & risk-reducing surgery. #gyncsm https://t.co/AoKQ0eXDy4 |
| Erica Bednar @EMBOSU RT @btrfly12: Reminder that testing positive for a high-risk genetic mutation does not mean you will definitely get cancer. It does help you be empowered in your healthcare decisions. #gyncsm |
| Christina Lizaso @btrfly12 RT @LguzzardiM: @GeneticCouns Genetic testing needs to be standard of care for all women with ovca, primary peritoneal, & fallopian tubal cancers. Not all healthcare providers are aware. #gyncsm |
| Erica Bednar @EMBOSU RT @FacingOurRisk: @btrfly12 Agreed! The field of genetics is changing rapidly. Genetic counselors & geneticists are most knowledgeable. Patients can connect w/them in person or by phone/Skype. #gyncsm https://t.co/scbhmTFw7L |
| Tanya Temkin @tanyaltee I’m surprised by the number of women I’ve met who found out they carry a mutation through DTC services without upfront genetic counseling. #gyncsm |
| Lisa M Guzzardi, RN @LguzzardiM @btrfly12 Agree!!! DIY home genetic testing is problematic with no easy solutions. Buyer beware, maybe a #blackbox warning would help. #gyncsm |
| Genetic Counselors @GeneticCouns I find that numbers mean different things to different people. Some think 20% is high versus others think its not high until 80%. Good to consider your personal comfort level when determining what options are right for you. #gyncsm ^JLH |
| @FacingOurRisk @FacingOurRisk A3: The new USPSTF guidelines are nearly identical to those published in 2013. Only addition is consideration of ancestry in evaluating risk & need for testing. #gyncsm |
| Christina Lizaso @btrfly12 RT @GeneticCouns: I find that numbers mean different things to different people. Some think 20% is high versus others think its not high until 80%. Good to consider your personal comfort level when determining what options are right for you. #gyncsm ^JLH |
| Genetic Counselors @GeneticCouns A3 Previvors may choose heightened surveillance or risk reduction. Lifestyle choices can help too e.g. Exercise, balanced diet & healthy weight. Talk to your doctor about best options for you. #gyncsm ^JLH |
| @FacingOurRisk @FacingOurRisk A3: Without USPSTF letter grades for increased screening such as breast MRIs or risk-reducing surgeries many insurers deny or limit coverage. #gyncsm https://t.co/jm2grLi3pe |
| Christina Lizaso @btrfly12 RT @tanyaltee: I’m surprised by the number of women I’ve met who found out they carry a mutation through DTC services without upfront genetic counseling. #gyncsm |
| Dee Sparacio @womenofteal RT @FacingOurRisk: A3: A3: The new USPSTF guidelines are nearly identical to those published in 2013. Only addition is consideration of ancestry in evaluating risk & need for testing. #gyncsm |
| @FacingOurRisk @FacingOurRisk A3: The new USPSTF recs fall short of meeting the needs of Americans who may be at increased risk of cancer due to hereditary factors. Check out our statement on the new guidelines. #gyncsm https://t.co/gjI5mY8sa7 |
| Genetic Counselors @GeneticCouns A3 New recs help remind that past hx of #brca important as testing may not been available @ time of diagnosis & criteria broader. Young age (50 or under), bilateral #brca, metastatic brca, triple negative brca, #ovca, #FTca & primary peritoneal all test candidates. #gyncsm ^JLH |
| @FacingOurRisk @FacingOurRisk A3: USPSTF guidelines ignore men, ignore mutations other than BRCA, & ignore people w/ cancers other than breast or ovarian. They must do better. #gyncsm |
| Dee Sparacio @womenofteal @FacingOurRisk Now if only they also included me in these guidelines. #gyncsm |
| Genetic Counselors @GeneticCouns A3 https://t.co/RdmfGoTzt2 to locate a genetic counselor near you or by telephone. We are here to help answer your genetic testing questions! #GCchat #gyncsm #genetics^JLH |
| Dee Sparacio @womenofteal RT @GeneticCouns: A3 Previvors may choose heightened surveillance or risk reduction. Lifestyle choices can help too e.g. Exercise, balanced diet & healthy weight. Talk to your doctor about best options for you. #gyncsm ^JLH |
| Erica Bednar @EMBOSU RT @GeneticCouns: A3 https://t.co/RdmfGoTzt2 to locate a genetic counselor near you or by telephone. We are here to help answer your genetic testing questions! #GCchat #gyncsm #genetics^JLH |
| Dee Sparacio @womenofteal RT @FacingOurRisk: A3: A3: Without USPSTF letter grades for increased screening such as breast MRIs or risk-reducing surgeries many insurers deny or limit coverage. #gyncsm https://t.co/jm2grLi3pe |
| Christina Lizaso @btrfly12 #gyncsm |
| Dee Sparacio @womenofteal RT @FacingOurRisk: A3: A3: The new USPSTF recs fall short of meeting the needs of Americans who may be at increased risk of cancer due to hereditary factors. Check out our statement on the new guidelines. #gyncsm https://t.co/gjI5mY8sa7 |
| Dee Sparacio @womenofteal RT @GeneticCouns: A3 New recs help remind that past hx of #brca important as testing may not been available @ time of diagnosis & criteria broader. Young age (50 or under), bilateral #brca, metastatic brca, triple negative brca, #ovca, #FTca & primary peritoneal all test candidates. #gyncsm ^JLH |
| Christina Lizaso @btrfly12 RT @GeneticCouns: A3 https://t.co/RdmfGoTzt2 to locate a genetic counselor near you or by telephone. We are here to help answer your genetic testing questions! #GCchat #gyncsm #genetics^JLH |
| Dee Sparacio @womenofteal RT @GeneticCouns: A3 https://t.co/RdmfGoTzt2 to locate a genetic counselor near you or by telephone. We are here to help answer your genetic testing questions! #GCchat #gyncsm #genetics^JLH |
| @FacingOurRisk @FacingOurRisk @womenofteal Yes, the USPSTF guidelines have a long way to go. They need significant improvement. #gyncsm |
| Dee Sparacio @womenofteal @FacingOurRisk I meant men. I am in those guidelines. #gyncsm |
| Erica Bednar @EMBOSU It's helpful to remember USPSTF has specific parameters and frameworks that they work within--they focus on evaluating high quality evidence for specific populations. Often in hereditary cancer, evidence is poor, out of date, or has gaps -- we have tons more work to do! #gyncsm |
| Dee Sparacio @womenofteal RT @EMBOSU: It's helpful to remember USPSTF has specific parameters and frameworks that they work within--they focus on evaluating high quality evidence for specific populations. Often in hereditary cancer, evidence is poor, out of date, or has gaps -- we have tons more work to do! #gyncsm |
| Lisa M Guzzardi, RN @LguzzardiM RT @EMBOSU: NCCN guidelines have recommended genetic testing in this population for many years, but clinical uptake has been slow. We're getting better -- increased awareness, new treatment implications (PARP), and more efforts to intentionally improve practice patterns helps! #gyncsm |
| Christina Lizaso @btrfly12 My aunt tested negative for BRCA1/2. Lucky for all of the family, her cancer team retested her later as testing for more mutations emerged. But it shouldn't come down to luck/vigilant care teams. #gyncsm |
| Christina Lizaso @btrfly12 RT @EMBOSU: It's helpful to remember USPSTF has specific parameters and frameworks that they work within--they focus on evaluating high quality evidence for specific populations. Often in hereditary cancer, evidence is poor, out of date, or has gaps -- we have tons more work to do! #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T3B: What are the benefits of testing for women already diagnosed with breast or ovarian cancer? #gyncsm |
| Dee Sparacio @womenofteal @btrfly12 Seems like we have to be our own advocates regarding testing. I know many women with #ovca that still have not been tested. #gyncsm |
| Genetic Counselors @GeneticCouns @btrfly12 We used to think finding one inherited risk factor answered all the questions. With the use of genetic testing panels, its not uncommon to find more than 1 inherited risk factor in a family. Risk assessment by a GC key to help ensure best test for family. #gyncsm ^JLH |
 | Hanna Switlekowski @HannaSwit RT @FacingOurRisk: A1b People w/ Eastern European Jewish ancestry are 10 times more likely to carry a BRCA mutation than the average population. 1:40 vs. 1:400 people. #gyncsm |
| Nancy's Point @NancysPoint Great question. RT @gyncsm: T3B: What are the benefits of testing for women already diagnosed with breast or ovarian cancer? #gyncsm |
| Christina Lizaso @btrfly12 RT @GeneticCouns: @btrfly12 We used to think finding one inherited risk factor answered all the questions. With the use of genetic testing panels, its not uncommon to find more than 1 inherited risk factor in a family. Risk assessment by a GC key to help ensure best test for family. #gyncsm ^JLH |
| Dee Sparacio @womenofteal #gyncsm |
| Christina Lizaso @btrfly12 RT @womenofteal: @btrfly12 Seems like we have to be our own advocates regarding testing. I know many women with #ovca that still have not been tested. #gyncsm |
| Dee Sparacio @womenofteal RT @GeneticCouns: @btrfly12 We used to think finding one inherited risk factor answered all the questions. With the use of genetic testing panels, its not uncommon to find more than 1 inherited risk factor in a family. Risk assessment by a GC key to help ensure best test for family. #gyncsm ^JLH |
| Lisa M Guzzardi, RN @LguzzardiM @gyncsm Targeted therapies, such as PARP drugs are paving the way for HBOC’s. Progression free survival is making a difference for these women. #gyncsm |
| Genetic Counselors @GeneticCouns Testing post diagnosis #bc or #ovca helpful to determine chance second cancer over lifetime, where, and if should consider risk reduction or extra surveillance. Helps relatives prevent cancer too. #gyncsm #GCchat ^JLH |
| Dee Sparacio @womenofteal RT @LguzzardiM: @gyncsm Targeted therapies, such as PARP drugs are paving the way for HBOC’s. Progression free survival is making a difference for these women. #gyncsm |
| @FacingOurRisk @FacingOurRisk A3b: Testing may help identify targeted treatments. It also helps inform surgical decisions, risk of other cancers, and potential risk to family members. #gyncsm |
 | Survivors CAN @Survivors_CAN RT @CDC_Cancer: Stay on top of your health this #GynecologicCancerAwarenessMonth! If you're aged 21 to 65, get a Pap or HPV test (or a combination of both) regularly to help prevent cervical cancer. Learn about your screening options: https://t.co/vRUcBfATyJ #gyncsm https://t.co/JCUpAtYZuD |
| Dee Sparacio @womenofteal Important point! #gyncsm |
| Tanya Temkin @tanyaltee For me, the benefits were knowing the cause of my ovarian cancer; alerting me to risk of other cancers and possibly risk to relatives. Also learning I was a good candidate for a PARP inhibitor! #gyncsm |
| Dee Sparacio @womenofteal RT @FacingOurRisk: A3b: A3b: Testing may help identify targeted treatments. It also helps inform surgical decisions, risk of other cancers, and potential risk to family members. #gyncsm |
| Genetic Counselors @GeneticCouns Testing at diagnosis also help with treatment decisions. #gyncsm ^JLH |
| Christina Lizaso @btrfly12 RT @tanyaltee: For me, the benefits were knowing the cause of my ovarian cancer; alerting me to risk of other cancers and possibly risk to relatives. Also learning I was a good candidate for a PARP inhibitor! #gyncsm |
| Dee Sparacio @womenofteal RT @GeneticCouns: Testing at diagnosis also help with treatment decisions. #gyncsm ^JLH |
| SHARE Cancer Support @SHARECancerSupt RT @GeneticCouns: @btrfly12 We used to think finding one inherited risk factor answered all the questions. With the use of genetic testing panels, its not uncommon to find more than 1 inherited risk factor in a family. Risk assessment by a GC key to help ensure best test for family. #gyncsm ^JLH |
| Erica Bednar @EMBOSU T3B: Targeted therapy consideration & clinical trial eligibility are increasingly factors that encourage women w/ #breast or #ovarian cancer to seek genetic counseling & genetic testing -- mutation status can guide which treatment or maintenance options may be recommended #gyncsm |
 | Tina J Hieken MD @TJH0828 RT @EMBOSU: It's helpful to remember USPSTF has specific parameters and frameworks that they work within--they focus on evaluating high quality evidence for specific populations. Often in hereditary cancer, evidence is poor, out of date, or has gaps -- we have tons more work to do! #gyncsm |
 | Eleanor Griffith, MS, CGC @elo81 @LguzzardiM @GeneticCouns Even though this has been the case for... over 10 years I think? 😔#gyncsm |
| Dee Sparacio @womenofteal RT @EMBOSU: T3B: T3B: Targeted therapy consideration & clinical trial eligibility are increasingly factors that encourage women w/ #breast or #ovarian cancer to seek genetic counseling & genetic testing -- mutation status can guide which treatment or maintenance options may be recommended #gyncsm |
| Christina Lizaso @btrfly12 RT @EMBOSU: T3B: T3B: Targeted therapy consideration & clinical trial eligibility are increasingly factors that encourage women w/ #breast or #ovarian cancer to seek genetic counseling & genetic testing -- mutation status can guide which treatment or maintenance options may be recommended #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T5: If you had genetic testing, what reaction did you have when you learned you had or did not have a BRCA mutation? #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T5: T5: If you had genetic testing, what reaction did you have when you learned you had or did not have a BRCA mutation? #gyncsm |
 | Joy Larsen Haidle @JoyLarsenHaidle Agree. That’s why chats like this to create awareness are so important. #gyncsm |
 | J.Antonio @mmsonoralab RT @CDC_Cancer: Uterine cancer, the most common cancer of the female reproductive system, is on the rise. Learn how you can prevent it, and the symptoms to look for from @CDCMMWR: https://t.co/yZ6RMTa7VS #gyncsm #GynecologicCancerAwarenessMonth https://t.co/HWgaf0fDrv |
| Dee Sparacio @womenofteal RT @JoyLarsenHaidle: Agree. That’s why chats like this to create awareness are so important. #gyncsm |
| @FacingOurRisk @FacingOurRisk A5 Many experience fear or sadness, but also a sense of empowerment. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm ...and for our advocates/organizations/genetic counselors: What advice can you offer to women with the mutations in how to to share this information with their families? #gyncsm |
| Genetic Counselors @GeneticCouns A4 GCs often provide letter to share w/ family explaining inherited risk in the family & how to learn more. Important to share information w/ relatives. Respect different choices w/ how to use results & differing opinions on whether want to know mutation status. #gyncsm ^JLH |
| Genetic Counselors @GeneticCouns A4 If you receive a relative letter, remember the courage it took to send it & the intent to help you learn more if you wish to do so. Talk to a GC to answer your questions. It does not obligate you to test, but instead helps you make an informed choice. #gyncsm ^JLH |
| Erica Bednar @EMBOSU T3B: Beyond treatment, genetic testing results can guide screening recommendations for other cancer risks (if a mutation found, may need high-risk screening), & results can provide important risk info for relatives (whether testing finds a mutation or not!) #gyncsm |
| Dee Sparacio @womenofteal T5: I: I was disappointed I did not have the mutation.Part of me I wanted to explain why I got #ovca . I also thought women with a the mutation has longer survival and more treatment. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: ...and for our advocates/organizations/genetic counselors: What advice can you offer to women with the mutations in how to to share this information with their families? #gyncsm |
| Dee Sparacio @womenofteal RT @GeneticCouns: A4 GCs often provide letter to share w/ family explaining inherited risk in the family & how to learn more. Important to share information w/ relatives. Respect different choices w/ how to use results & differing opinions on whether want to know mutation status. #gyncsm ^JLH |
| Christina Lizaso @btrfly12 When my family member tested positive, it was an answer to something we knew was going on in the family. It was a relief that is is moderate risk vs high risk. It being moderate and more rare also makes healthcare decision making that much more murky though. #gyncsm |
| Lisa M Guzzardi, RN @LguzzardiM @gyncsm Prevention for extended family members by genetic testing is a priceless gift from those previously affected by HBOC. Having options & making life style changes are just a few more extended gifts. #gyncsm |
| @FacingOurRisk @FacingOurRisk A6: Visit organizations and websites with evidence-based information that you can share. FORCE is the only national patient advocacy organization specifically focused on adult-onset hereditary cancers. Visit https://t.co/qzKW6TA2el for the most current info and support. #gyncsm |
| Tanya Temkin @tanyaltee @gyncsm T5: complex reactions — relieved that my OvCa wasn’t my “fault”; surprised that as an Ashkenazi Jew with a mom who died of breast cancer genetic testing had never been offered to me earlier; I was completely #BRCA-unaware. So I was gobsmacked as they say across the Pond. #gyncsm |
| Dee Sparacio @womenofteal Well said. #gyncsm |
| Erica Bednar @EMBOSU If a mutation was found on your genetic testing, take advantage of a genetic counselor! Not sure who in the family to tell? Not sure how to answer relatives' questions? Not sure where your relatives should look to find a GC? We can help!! https://t.co/KvHDFbQyqd #gyncsm |
| Dee Sparacio @womenofteal RT @FacingOurRisk: A6: A6: Visit organizations and websites with evidence-based information that you can share. FORCE is the only national patient advocacy organization specifically focused on adult-onset hereditary cancers. Visit https://t.co/qzKW6TA2el for the most current info and support. #gyncsm |
| Genetic Counselors @GeneticCouns If you find a mutation, data changes over time as do management recommendations. GCs can be a resource to help keep you current. If a mutation was not found and testing was >5 years ago, contact a GC to consider updated testing to try again. #gyncsm ^JLH |
| Nancy's Point @NancysPoint @gyncsm T5: Pretty much expected to test +, so wasn't shocked. At that point, we were used to getting bad news. Or sorta numb to it. #gyncsm |
| Eleanor Griffith, MS, CGC @elo81 @gyncsm Another benefit is reducing cancer risks- especially for someone dx with breast ca who has a good prognosis— BSO may be lifesaving. And.... #CascadeTesting! Testing affected individual in family is ideal and results + or - benefit family. #gyncsm |
| Dee Sparacio @womenofteal RT @EMBOSU: If a mutation was found on your genetic testing, take advantage of a genetic counselor! Not sure who in the family to tell? Not sure how to answer relatives' questions? Not sure where your relatives should look to find a GC? We can help!! https://t.co/KvHDFbQyqd #gyncsm |
| Dee Sparacio @womenofteal RT @elo81: @gyncsm Another benefit is reducing cancer risks- especially for someone dx with breast ca who has a good prognosis— BSO may be lifesaving. And.... #CascadeTesting! Testing affected individual in family is ideal and results + or - benefit family. #gyncsm |
 | Marcelo Ceron ◤✠◢ @marceloceronMD RT @JCO_ASCO: Nivolumab monotherapy in recurrent/metastatic cervical, vaginal, or vulvar cancer - results from the CheckMate 358 trial. https://t.co/AnCfMhTR9Y #ImmunoOnc #gyncsm https://t.co/zwk8YfCtwE |
| GYN Cancer | #GYNCSM @gyncsm Thanks for providing great information and personal perspectives on The Breast and Ovarian Cancer Connection. Time to share closing thoughts on our topic. You can start your tweet w/ “TIL:” standing for Today I Learned... #gyncsm |
 | The ObG Project @TheObGProject RT @GeneticCouns: If you find a mutation, data changes over time as do management recommendations. GCs can be a resource to help keep you current. If a mutation was not found and testing was >5 years ago, contact a GC to consider updated testing to try again. #gyncsm ^JLH |
| The ObG Project @TheObGProject RT @GeneticCouns: Testing post diagnosis #bc or #ovca helpful to determine chance second cancer over lifetime, where, and if should consider risk reduction or extra surveillance. Helps relatives prevent cancer too. #gyncsm #GCchat ^JLH |
 | Dr. Sue Gross @DrSueGross RT @GeneticCouns: Testing post diagnosis #bc or #ovca helpful to determine chance second cancer over lifetime, where, and if should consider risk reduction or extra surveillance. Helps relatives prevent cancer too. #gyncsm #GCchat ^JLH |
| Dee Sparacio @womenofteal RT @gyncsm: Thanks for providing great information and personal perspectives on The Breast and Ovarian Cancer Connection. Time to share closing thoughts on our topic. You can start your tweet w/ “TIL:” standing for Today I Learned... #gyncsm |
| Dee Sparacio @womenofteal @CDCgov has good resource too- CDC Does Breast or Ovarian cancer run in your family ? https://t.co/qQuS4Pr1pW #gyncsm |
| Christina Lizaso @btrfly12 RT @elo81: @gyncsm Another benefit is reducing cancer risks- especially for someone dx with breast ca who has a good prognosis— BSO may be lifesaving. And.... #CascadeTesting! Testing affected individual in family is ideal and results + or - benefit family. #gyncsm |
| Erica Bednar @EMBOSU Great resources exist to help relatives share results and access "cascade" genetic testing: check out @KintalkUCSF https://t.co/GlpGnGTXbn (a research study offering testing) + many genetic testing laboratories now offering ways to get tested directly #gyncsm |
| @FacingOurRisk @FacingOurRisk @EMBOSU FORCE even has a sample letter for sharing info about the mutation with family members and children. We encourage anyone considering testing to seek out a genetic counselor! #gyncsm |
| Christina Lizaso @btrfly12 RT @GeneticCouns: If you find a mutation, data changes over time as do management recommendations. GCs can be a resource to help keep you current. If a mutation was not found and testing was >5 years ago, contact a GC to consider updated testing to try again. #gyncsm ^JLH |
 | TrueFaith_Living✨ @KeepItMovn2 RT @CDC_Cancer: Does #BreastCancer or #OvarianCancer run in your family? Your family health history can help you understand if you are at higher risk for hereditary breast and ovarian cancer. Here’s what to ask your family: https://t.co/fPaaIAhLqV #gyncsm https://t.co/07YB5okqAj |
| Dee Sparacio @womenofteal RT @FacingOurRisk: @EMBOSU FORCE even has a sample letter for sharing info about the mutation with family members and children. We encourage anyone considering testing to seek out a genetic counselor! #gyncsm |
| Dee Sparacio @womenofteal RT @EMBOSU: Great resources exist to help relatives share results and access "cascade" genetic testing: Great resources exist to help relatives share results and access "cascade" genetic testing: check out @KintalkUCSF https://t.co/GlpGnGTXbn (a research study offering testing) + many genetic testing laboratories now offering ways to get tested directly #gyncsm |
| Eleanor Griffith, MS, CGC @elo81 @LguzzardiM @gyncsm yes, exactly 😉. I talk to so many unaffected patients whose affected relatives never had testing done. It’s a hard starting point (and not efficient or cost effective to test 20 unaffected descendants rather than the affected individual in the family. #gyncsm |
| Christina Lizaso @btrfly12 RT @tanyaltee: @gyncsm T5: @gyncsm T5: complex reactions — relieved that my OvCa wasn’t my “fault”; surprised that as an Ashkenazi Jew with a mom who died of breast cancer genetic testing had never been offered to me earlier; I was completely #BRCA-unaware. So I was gobsmacked as they say across the Pond. #gyncsm |
 | DaveisAliveAndKickn @AliveAndKicknDD RT @GeneticCouns: Most guidelines consider early age as 50 or under. ^JLH #gyncsm |
| Christina Lizaso @btrfly12 RT @FacingOurRisk: @EMBOSU FORCE even has a sample letter for sharing info about the mutation with family members and children. We encourage anyone considering testing to seek out a genetic counselor! #gyncsm |
| Erica Bednar @EMBOSU RT @FacingOurRisk: A6: A6: Visit organizations and websites with evidence-based information that you can share. FORCE is the only national patient advocacy organization specifically focused on adult-onset hereditary cancers. Visit https://t.co/qzKW6TA2el for the most current info and support. #gyncsm |
 | CancerDotNet @CancerDotNet RT @womenofteal: This month is gyn cancer awareness month. Have you joined the #IWishIKnew campaign? You can hear from OC survivors about what they wish they had known before they were diagnosed. #gyncsm |
| Christina Lizaso @btrfly12 RT @EMBOSU: Great resources exist to help relatives share results and access "cascade" genetic testing: Great resources exist to help relatives share results and access "cascade" genetic testing: check out @KintalkUCSF https://t.co/GlpGnGTXbn (a research study offering testing) + many genetic testing laboratories now offering ways to get tested directly #gyncsm |
| Christina Lizaso @btrfly12 RT @womenofteal: @CDCgov has good resource too- CDC Does Breast or Ovarian cancer run in your family ? https://t.co/qQuS4Pr1pW #gyncsm |
| Genetic Counselors @GeneticCouns TIL how fast an hour can disappear when talking about genetics with such an engaged group! I appreciated the perspectives you all shared & the wisdom pearls. I will take them with me tomorrow. #gyncsm #Alwayslearning ^JLH |
| Lisa M Guzzardi, RN @LguzzardiM Join us, #gyncsm ! We feature 3K+ savvy consumers & esteemed clinicians from 50 different countries via @facebook #BRCA Advanced 101 & 102 #JournalClub! #hereditarycancer #genetics #cancerresearch #ovariancancer #peritonealcancer #fallopiantubecancer #sharingiscaring |
| Eleanor Griffith, MS, CGC @elo81 @gyncsm I think the Angelina Jolie story helped a lot. Wish we had a celebrity with a (known) dx of #LynchSyndrome who was similarly public about their story. #gyncsm |
| Dee Sparacio @womenofteal TIL There are more gene mutations than BRCA that can increase your risk of breast and ovarian cancers. And Genetics counselors are key to understanding your cancer risk. #gyncsm |
| Christina Lizaso @btrfly12 TIL: We still have a long way to go in offering cancer genetic counseling and testing to those who could benefit. Not all may desire or be ready for testing and what it brings, but it should be clearly offered and the benefits and risks discussed. #gyncsm |
| Joy Larsen Haidle @JoyLarsenHaidle RT @LguzzardiM: @gyncsm Prevention for extended family members by genetic testing is a priceless gift from those previously affected by HBOC. Having options & making life style changes are just a few more extended gifts. #gyncsm |
| Christina Lizaso @btrfly12 RT @womenofteal: TIL There are more gene mutations than BRCA that can increase your risk of breast and ovarian cancers. And Genetics counselors are key to understanding your cancer risk. #gyncsm |
| Dee Sparacio @womenofteal I've learned so much from being part of this group. #gyncsm |
| Christina Lizaso @btrfly12 RT @LguzzardiM: Join us, #gyncsm ! We feature 3K+ savvy consumers & esteemed clinicians from 50 different countries via @facebook #BRCA Advanced 101 & 102 #JournalClub! #hereditarycancer #genetics #cancerresearch #ovariancancer #peritonealcancer #fallopiantubecancer #sharingiscaring |
| @FacingOurRisk @FacingOurRisk Many assume that insurance won't cover genetic testing. Or, they fear insurance repercussions. FORCE has info on legal rights and insurance coverage. We also have sample insurance appeal letters for those who encounter problems with coverage. #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: TIL: TIL: We still have a long way to go in offering cancer genetic counseling and testing to those who could benefit. Not all may desire or be ready for testing and what it brings, but it should be clearly offered and the benefits and risks discussed. #gyncsm |
| Christina Lizaso @btrfly12 RT @FacingOurRisk: Many assume that insurance won't cover genetic testing. Or, they fear insurance repercussions. FORCE has info on legal rights and insurance coverage. We also have sample insurance appeal letters for those who encounter problems with coverage. #gyncsm |
| Dee Sparacio @womenofteal RT @elo81: @gyncsm I think the Angelina Jolie story helped a lot. Wish we had a celebrity with a (known) dx of #LynchSyndrome who was similarly public about their story. #gyncsm |
 | Spannerinmyworks @SpannerInMe RT @FacingOurRisk: Many assume that insurance won't cover genetic testing. Or, they fear insurance repercussions. FORCE has info on legal rights and insurance coverage. We also have sample insurance appeal letters for those who encounter problems with coverage. #gyncsm |
| Erica Bednar @EMBOSU TIL it's challenging to cover the complexities of Hereditary Breast and Ovarian Cancer in 1 short #gyncsm chat!! Check out https://t.co/70K5iVo9Fk to find Genetic Counseling options near you to continue discussion & receive tailored risk information specific to you+your family |
| Dee Sparacio @womenofteal RT @EMBOSU: TIL it's challenging to cover the complexities of Hereditary Breast and Ovarian Cancer in 1 short #gyncsm chat!! Check out https://t.co/70K5iVo9Fk to find Genetic Counseling options near you to continue discussion & receive tailored risk information specific to you+your family |
| Christina Lizaso @btrfly12 I feel like some ins companies deny all testing and wait for the folks with the time/skill/desire to subject themselves to the appeals process. Very frustrating. #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: I feel like some ins companies deny all testing and wait for the folks with the time/skill/desire to subject themselves to the appeals process. Very frustrating. #gyncsm |
| Tanya Temkin @tanyaltee TIL exactly what “moderate risk” genes are. They might not seem so moderate to someone who has a pathogenic variant in one of those genes! #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm Thanks to everyone for the wonderful conversation. We will not be chatting in October but be sure to catch our next #gyncsm chat on Wed Nov 13th when we’ll discuss Stress. |
| @FacingOurRisk @FacingOurRisk @womenofteal New research shows that nearly half of the mutations discovered in multigene panel testing are in genes other than BRCA. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm As always, remember to tweet things of interest with hashtag #gyncsm to keep the conversation going between chats. |
| Eleanor Griffith, MS, CGC @elo81 @btrfly12 I would love to interview you some time for @GreyGeneticsPod if you have any interest! I’ve had lots of guests with #BRCA mutations and would love to spread more awareness about mutations in genes outside #BRCA #gyncsm |
| Dee Sparacio @womenofteal So appreciate that @FacingOurRisk and @GeneticCouns - @JoyLarsenHaidle could join us tonight and share such valuable information with our community . Thank you #gyncsm |
| Dee Sparacio @womenofteal RT @tanyaltee: TIL exactly what “moderate risk” genes are. They might not seem so moderate to someone who has a pathogenic variant in one of those genes! #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: Thanks to everyone for the wonderful conversation. We will not be chatting in October but be sure to catch our next #gyncsm chat on Wed Nov 13th when we’ll discuss Stress. |
| Dee Sparacio @womenofteal Grateful for our #gyncsm co-moderators! @btrfly12 @ShannonWestin @temkins @journeycancer @DrBeckerSchutte #gyncsm |
| Dee Sparacio @womenofteal Remember to check https://t.co/Df2f7OBZUD for a transcript of the chat and resources #gyncsm |
| Lisa M Guzzardi, RN @LguzzardiM @womenofteal Thank you @womenofteal ! Feeling is mutual here at #gyncsm , gratitude is the word. #sharingiscaring |
| SHARE Cancer Support @SHARECancerSupt RT @gyncsm: As always, remember to tweet things of interest with hashtag #gyncsm to keep the conversation going between chats. |
| GYN Cancer | #GYNCSM @gyncsm Thanks so much for your time preparing and sharing on tonight's chat @FacingOurRisk @GeneticCouns #gyncsm |
| Nancy's Point @NancysPoint Thanks so much for hosting this chat, @womenofteal and @btrfly12. And thank you, to everyone who joined in! Good night all! #gyncsm |
| @FacingOurRisk @FacingOurRisk Thank you for hosting @womenofteal! #gyncsm |
| Genetic Counselors @GeneticCouns Thanks for the invitation and for chatting with us tonight! Remember if you have questions, https://t.co/daOkExtzAf is a great tool to find a GC near you. ^JLH #gyncsm |
| Dee Sparacio @womenofteal It is Survey time. Help us understand our community and what topics our members would like to discuss. Fill out our short 10 ques survey at https://t.co/teXsEUANpB Thank you. #gyncsm https://t.co/SNLBc8S5f1 |
| GYN Cancer | #GYNCSM @gyncsm Thanks to all the advocates, patients and genetic counselors who joined us for #gyncsm tonight. We hope you'll take our 2019 community survey. https://t.co/7VNQdOEoia https://t.co/YaIyfCnZFB |
| GYN Cancer | #GYNCSM @gyncsm RT @GeneticCouns: Thanks for the invitation and for chatting with us tonight! Remember if you have questions, https://t.co/daOkExtzAf is a great tool to find a GC near you. ^JLH #gyncsm |
| Eleanor Griffith, MS, CGC @elo81 @EMBOSU @btrfly12 Often, limited family hx may be enough to determine that someone meets criteria for testing - but more detailed family hx is then helpful for risk assessment post test, esp. when results are negative but also when positive. #gyncsm |
 | Lawrence Kasherman @LKasherman RT @JCO_ASCO: Nivolumab monotherapy in recurrent/metastatic cervical, vaginal, or vulvar cancer - results from the CheckMate 358 trial. https://t.co/AnCfMhTR9Y #ImmunoOnc #gyncsm https://t.co/zwk8YfCtwE |
| Dee Sparacio @womenofteal Thanks @btrfly12 for being the best co-moderator I could ask for these past 6 years . Looking forward to many more. #gyncsm Hope one of these days to meet IRL. https://t.co/HE9nrYJLmZ |
 | Nathan 🌄☕️🛫☕️👨🏽💻🛬🌅🛌 @n8dh RT @EMBOSU: TIL it's challenging to cover the complexities of Hereditary Breast and Ovarian Cancer in 1 short #gyncsm chat!! Check out https://t.co/70K5iVo9Fk to find Genetic Counseling options near you to continue discussion & receive tailored risk information specific to you+your family |
| Christina Lizaso @btrfly12 RT @FacingOurRisk: @womenofteal New research shows that nearly half of the mutations discovered in multigene panel testing are in genes other than BRCA. #gyncsm |
| Christina Lizaso @btrfly12 RT @tanyaltee: TIL exactly what “moderate risk” genes are. They might not seem so moderate to someone who has a pathogenic variant in one of those genes! #gyncsm |
| Dee Sparacio @womenofteal @FacingOurRisk @GeneticCouns Christina (@btrfly12 )is the person behind the @gyncsm handle and the one that makes the chat flow so well month after month. #gyncsm |
| Christina Lizaso @btrfly12 #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: #gyncsm |
 | Runsi Ayona Sen @RunsiAyona RT @womenofteal: This month is gyn cancer awareness month. Have you joined the #IWishIKnew campaign? You can hear from OC survivors about what they wish they had known before they were diagnosed. #gyncsm |
| Christina Lizaso @btrfly12 @womenofteal @FacingOurRisk @GeneticCouns @gyncsm Very kind. We make a great team. Dee sets out a wonderful set of topics and topic areas to cover within those. She also does a lot of research on topic resources and puts together the post-chat summaries which I think are an amazing resource. +much more. Go team :) #gyncsm |
 | Ali Saiz, MD MS @AllisonSaizMD Thanks @michaelcburgess for joining us at our @SGO_org dinner tonight- great having #physiciansincongress to advocate for your constituents and our patients! We appreciate your support of the #HPVvaccine- agree that it’s a #cancerprevention innovation #gyncsm #SGOMtg #SGOFlyIn |
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