#GynCSM Transcript

Healthcare social media transcript of the #GynCSM hashtag.
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See #GynCSM Influencers/Analytics.

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GYN Cancer | #GYNCSM @gyncsm
Welcome to #gyncsm - a passionate community for gynecologic cancer survivors, caregivers, advocates and health care providers.
Dee Sparacio @womenofteal
RT @gyncsm: Welcome to #gyncsm - a passionate community for gynecologic cancer survivors, caregivers, advocates and health care providers.
Tobey @BRCAinfo
Happy anniversary #gyncsm Thanks 🙏 for all you do ♥️ https://t.co/PDHeZPnI0j
GYN Cancer | #GYNCSM @gyncsm
We start out with brief intro’s - Please take a moment to introduce yourself. #gyncsm
EcanaAdrienne @AdrienneEcana
#gyncsm. Adrienne ...Glad to be here!!
Dee Sparacio @womenofteal
RT @gyncsm: We start out with brief intro’s - Please take a moment to introduce yourself. #gyncsm
GYN Cancer | #GYNCSM @gyncsm
#gyncsm is so happy to celebrate our 7th anniversary tonight. A special thanks to moderators: @ShannonWestin @temkins @journeycancer @DrBeckerSchutte This year’s guests: @MarshallTF_PhD @KDRichardson924 @UICMSTP @AdrienneEcana and Supporters: @SGO_org @IamCervivor @drdonsdizon https://t.co/QlzVGflZUu
Suzie Siegel @SuzieSiegel
I'm an 18-year survivor of vaginal #leiomyosarcoma that went twice to my right lung. #gyncsm
Dee Sparacio @womenofteal
RT @gyncsm: #gyncsm is so happy to celebrate our 7th anniversary tonight. A special thanks to moderators: @ShannonWestin @temkins @journeycancer @DrBeckerSchutte This year’s guests: @MarshallTF_PhD @KDRichardson924 @UICMSTP @AdrienneEcana and Supporters: @SGO_org @IamCervivor @drdonsdizon https://t.co/QlzVGflZUu
Mutant Strong @IrinaBrooke1
RT @gyncsm: #gyncsm is so happy to celebrate our 7th anniversary tonight. A special thanks to moderators: @ShannonWestin @temkins @journeycancer @DrBeckerSchutte This year’s guests: @MarshallTF_PhD @KDRichardson924 @UICMSTP @AdrienneEcana and Supporters: @SGO_org @IamCervivor @drdonsdizon https://t.co/QlzVGflZUu
Dee Sparacio @womenofteal
Dee here! Dx #ovca Stage3B 2005, recurrence 2008, OC research advocate, blogger & co-moderator #gyncsm for the past 7 years!
EcanaAdrienne @AdrienneEcana
#gyncsm Happy Anniversary!!!🤗
Dee Sparacio @womenofteal
@AdrienneEcana So glad you are joining us again! #gyncsm
Dee Sparacio @womenofteal
@SuzieSiegel Great to have you tonight too Suzie! #gyncsm
Christina Lizaso @btrfly12
Christina Lizaso – passionate re: community engagement and cancer care. I’ll be moderating as @gyncsm today. #gyncsm
Mutant Strong @IrinaBrooke1
@gyncsm @ShannonWestin @temkins @journeycancer @DrBeckerSchutte @MarshallTF_PhD @KDRichardson924 @uicmstp @AdrienneEcana @SGO_org @IamCervivor @drdonsdizon Congratulations #gyncsm
me🇺🇸 @ZHeatherChamp
Good evening #PTEN family- anyone around to participate? We have a MUCH needed view to share. 😘👍🏻👍🏻
Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba
Hi all. I'm Shereese from Maryland #gyncsm https://t.co/LMtANZhfde
GYN Cancer | #GYNCSM @gyncsm
The #gyncsm co-moderators are @womenofteal @btrfly12 Our health care moderators are @ShannonWestin @temkins @journeycancer and our mental health moderator @DrBeckerSchutte Find more info on our blog at https://t.co/oAfi7Me49e
Dee Sparacio @womenofteal
@ShereesePubHlth Hi there ! Thanks for joining us! #gyncsm
Dee Sparacio @womenofteal
@IrinaBrooke1 @gyncsm @ShannonWestin @temkins @journeycancer @DrBeckerSchutte @MarshallTF_PhD @KDRichardson924 @uicmstp @AdrienneEcana @SGO_org @IamCervivor @drdonsdizon Thanks so much! #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. Please continue intro's and welcomes - we'll start in w/ the "ground rules" :) and tips!
Dee Sparacio @womenofteal
RT @gyncsm: The #gyncsm co-moderators are @womenofteal @btrfly12 Our health care moderators are @ShannonWestin @temkins @journeycancer and our mental health moderator @DrBeckerSchutte Find more info on our blog at https://t.co/oAfi7Me49e
Amanda Crowell Itliong @MIShouldTalk
Happy 7th! Happy to be here tonight from Michigan. Patient and advocate currently in treatment #gyncsm
Michele Rhee @michelerhee
@gyncsm Michele here! #AYACSM patient & advocate, #gyncsm supporter & friend!
Dee Sparacio @womenofteal
RT @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. Please continue intro's and welcomes - we'll start in w/ the "ground rules" :) and tips!
Erica Bednar @EMBOSU
Happy ovarian cancer awareness month (& Hereditary Breast and Ovarian Cancer awareness week at the end of Sept)! I'm Erica, genetic counselor at MD Anderson focusing on hereditary gyn cancers #gyncsm #OvarianCancerAwarenessMonth
Mutant Strong @IrinaBrooke1
@SuzieSiegel Wow that something. Hope you are well #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
@MIShouldTalk Welcome Amanda! #gyncsm
Eleanor Griffith, MS, CGC @elo81
I’m a certified genetic counselor and the owner of @GreyGenetics which offers #geneticcounseling through #telehealth. We have >20 GCs on our Network. https://t.co/hNkTJ6QT3z I also host the podcast @GreyGeneticsPod #gyncsm
Dee Sparacio @womenofteal
@michelerhee @gyncsm Hi Michele Hope you are well. Thanks for stopping by. #gyncsm
Mimi @Mimiinmendon
#gyncsm Mimi here. FTC Stage2-7 years out. Happy Anniversary and thanks for your advocacy!
Dee Sparacio @womenofteal
RT @gyncsm: The #gyncsm chat promotes community in a public forum. Learn more about risks/benefits: The #gyncsm chat promotes community in a public forum. Learn more about risks/benefits: https://t.co/TipZUv1jQy
Christina Lizaso @btrfly12
#gyncsm chats are an open discussion and all are welcome to share from their experiences and perspectives
Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba
Congratulations on 7 years. Wow, that's quite a milestone when you think of what support this chat is to women. #gyncsm ncsm https://t.co/VUUqw0H8b6
Mutant Strong @IrinaBrooke1
I’m a BC survivor and a BRCA advocate. #gyncsm
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.
Dee Sparacio @womenofteal
@elo81 @GreyGenetics @GreyGeneticsPod Welcome ! #gyncsm
Laura J Havrilesky @LHavrilesky
#gyncsm
Michele Rhee @michelerhee
@womenofteal @gyncsm I'm so glad I could make it! #gyncsm
Amanda Crowell Itliong @MIShouldTalk
Excited we’re talking about us rare ladies tonight! #gyncsm
Sarah Temkin @temkins
RT @gyncsm: #gyncsm is so happy to celebrate our 7th anniversary tonight. A special thanks to moderators: @ShannonWestin @temkins @journeycancer @DrBeckerSchutte This year’s guests: @MarshallTF_PhD @KDRichardson924 @UICMSTP @AdrienneEcana and Supporters: @SGO_org @IamCervivor @drdonsdizon https://t.co/QlzVGflZUu
Dee Sparacio @womenofteal
@Mimiinmendon Hello Mimi ,Glad you are joining us. #gyncsm
GYN Cancer | #GYNCSM @gyncsm
Tonight #gyncsm is holding a chat on Rare Ovarian Cancer and Other Gynecologic Cancers.
Dee Sparacio @womenofteal
RT @btrfly12: #gyncsm chats are an open discussion and all are welcome to share from their experiences and perspectives
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
@LHavrilesky Hi Laura! #gyncsm
GYN Cancer | #GYNCSM @gyncsm
We’ll use a topic format with T1; T2 etc Please include the corresponding T# at the front of your comment or answer. There are 7 Questions and at the end of the chat a Today I Learned (TIL) wrap up #gyncsm
Dee Sparacio @womenofteal
#gyncsm tagged resources and referrals are not a substitute for speaking with your doctor who understands your needs and history.
Dee Sparacio @womenofteal
RT @gyncsm: Tonight #gyncsm is holding a chat on Rare Ovarian Cancer and Other Gynecologic Cancers.
Dee Sparacio @womenofteal
RT @gyncsm: We’ll use a topic format with T1; T2 etc Please include the corresponding T# at the front of your comment or answer. There are 7 Questions and at the end of the chat a Today I Learned (TIL) wrap up #gyncsm
GYN Cancer | #GYNCSM @gyncsm
You can find the questions we’ll cover on today’s chat on our #gyncsm blog page: https://t.co/HXiWeIMxjr
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
Dee Sparacio @womenofteal
RT @gyncsm: You can find the questions we’ll cover on today’s chat on our #gyncsm blog page: You can find the questions we’ll cover on today’s chat on our #gyncsm blog page: https://t.co/HXiWeIMxjr
FdtnForWomensCancer @GYNCancer
RT @ECANAwomen: This week's #GCAM resource is our diagnosis & treatment Q&A. Our Steering Group built this resource around the most urgent questions they had at their #endometrialcancer diagnosis & during treatment. Visit & share https://t.co/I16VD4oHEU #GynecologicCancerAwarenessMonth #gyncsm https://t.co/Kf8fAyahjO
GYN Cancer | #GYNCSM @gyncsm
In the US, @theNCI defines a rare cancer as one that occurs in fewer than 15 out of 100,000 people each year. Other countries and organizations have other definitions. Rare to begin with, some types and sub-types of gyn cancers are even less common than others. #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.
Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba
RT @gyncsm: You can find the questions we’ll cover on today’s chat on our #gyncsm blog page: You can find the questions we’ll cover on today’s chat on our #gyncsm blog page: https://t.co/HXiWeIMxjr
FdtnForWomensCancer @GYNCancer
RT @SHAREing: #Ovariancancer is called the silent killer, but its symptoms are real. Use #IWishIKnew to tell us what you want people to know about ovarian cancer, and learn more about ovarian cancer here: https://t.co/Nnf93CTESA #ovariancancerawarenessmonth #gyncsm https://t.co/t9AyK6AZqn
Dee Sparacio @womenofteal
RT @gyncsm: In the US, @theNCI defines a rare cancer as one that occurs in fewer than 15 out of 100,000 people each year. Other countries and organizations have other definitions. Rare to begin with, some types and sub-types of gyn cancers are even less common than others. #gyncsm
EcanaAdrienne @AdrienneEcana
RT @gyncsm: In the US, @theNCI defines a rare cancer as one that occurs in fewer than 15 out of 100,000 people each year. Other countries and organizations have other definitions. Rare to begin with, some types and sub-types of gyn cancers are even less common than others. #gyncsm
Barbara Solit, MBA @BarbaraSolit
Hello! Ovarian germ cell advocate here. New to tweetchats! #gyncsm
GYN Cancer | #GYNCSM @gyncsm
Those diagnosed with rare cancers, however defined, have some common experiences and challenges. In this chat we hope you will learn a little bit about some of the rarer gynecologic cancer types. Here comes Topic 1 (T1:)... #gyncsm
Eleanor Griffith, MS, CGC @elo81
This is also the first time i’ve remembered to join a tweetchat when it was beginning v when it was ending. 🙃#gyncsm <— now i remembered the # 💪
Dee Sparacio @womenofteal
@BarbaraSolit Welcome Barbara! Happy to have you join us! #gyncsm
Dee Sparacio @womenofteal
RT @gyncsm: Those diagnosed with rare cancers, however defined, have some common experiences and challenges. In this chat we hope you will learn a little bit about some of the rarer gynecologic cancer types. Here comes Topic 1 (T1:)... #gyncsm
GYN Cancer | #GYNCSM @gyncsm
T1: For ovarian cancer, most women have a serous epithelial high grade type. What are the rare ovarian cancers types? How do they differ from the more common type? How do treatment and symptoms differ? #gyncsm
Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba
RT @gyncsm: Those diagnosed with rare cancers, however defined, have some common experiences and challenges. In this chat we hope you will learn a little bit about some of the rarer gynecologic cancer types. Here comes Topic 1 (T1:)... #gyncsm
Dee Sparacio @womenofteal
RT @gyncsm: T1: T1: For ovarian cancer, most women have a serous epithelial high grade type. What are the rare ovarian cancers types? How do they differ from the more common type? How do treatment and symptoms differ? #gyncsm
Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba
RT @gyncsm: T1: T1: For ovarian cancer, most women have a serous epithelial high grade type. What are the rare ovarian cancers types? How do they differ from the more common type? How do treatment and symptoms differ? #gyncsm
GYN Cancer | #GYNCSM @gyncsm
T1: Even withing the most common type of ovarian cancer, there are rarer sub-types: [slide with Rare Epithelial Ovarian Cancer types] #gyncsm https://t.co/wtFkez1Vt9
KD Richardson @KDRichardson924
@gyncsm GCT - slow growing #gyncsm
Amanda Crowell Itliong @MIShouldTalk
T1: I have low grade ovarian cancer. It grows slower which is awesome but most typical treatments don’t work so that part sucks. #gyncsm
GYN Cancer | #GYNCSM @gyncsm
T1: There are also many other tupes of Ovarian Cancer [slide] #gyncsm https://t.co/Zu4ARbhxc9
Dee Sparacio @womenofteal
Rare ovarian cancers also include rare Germ Cell and Sex Cord Stromal cells include : #gyncsm https://t.co/0cickdkkBU
ECANA @ECANAwomen
RT @AdrienneEcana: What's your most urgent question about #GynecologicCancer and #endometrialcancer?
Geetu Bhandoria @Bhandoria
#frailty @IJGCfellows @IJGConline @ESGO_society @ENYGO_official
Christina Lizaso @btrfly12
T1: Women are diagnosed with a cancer almost no one talks about – then find out there are all these types and sub-types and it gets confusing very fast. When I found out about my genetic mutation I thought that was it – nope, the spiral always goes deeper. #gyncsm
Suzie Siegel @SuzieSiegel
T1. Although very rare, #leiomyosarcoma -- a cancer of smooth muscle -- can occur in the ovary. It would be treated like other gyn LMS. #gyncsm Pubmed mentions other types of #sarcoma than can occur in the ovaries. https://t.co/VnBVyKrRAT
Sarah Temkin @temkins
A1: With increased molecular information #ovariancancer has been subdivided into many "types" many of which are considered rare. Treatment may differ based on the type. This is not even getting to molecular subtyping! #gyncsm https://t.co/lRMqlaLBs2
FLCH Reproductive ED @FLCHFPED
RT @gyncsm: Welcome to #gyncsm - a passionate community for gynecologic cancer survivors, caregivers, advocates and health care providers.
Amanda Crowell Itliong @MIShouldTalk
T1: I was first dx as borderline ovarian cancer stage 2B but it quickly evolved to low grade 3C and then probably 4. (Probably is because we don’t know if my low grade brain tumors are related or not. #gyncsm
Christina Lizaso @btrfly12
@MIShouldTalk With each rarer type, there is even less research and less known about best treatments. #gyncsm
Dee Sparacio @womenofteal
T1 Low grade #ovca - low chromosome instability, KRAS, BRAF, ERBB2 mutations with slow tumor development. #gyncsm https://t.co/T4bJO8Rloa
Christina Lizaso @btrfly12
RT @temkins: A1: A1: With increased molecular information #ovariancancer has been subdivided into many "types" many of which are considered rare. Treatment may differ based on the type. This is not even getting to molecular subtyping! #gyncsm https://t.co/lRMqlaLBs2
Dee Sparacio @womenofteal
RT @temkins: A1: A1: With increased molecular information #ovariancancer has been subdivided into many "types" many of which are considered rare. Treatment may differ based on the type. This is not even getting to molecular subtyping! #gyncsm https://t.co/lRMqlaLBs2
Liv @livylove90
RT @gyncsm: Welcome to #gyncsm - a passionate community for gynecologic cancer survivors, caregivers, advocates and health care providers.
Geetu Bhandoria @Bhandoria
@gyncsm @ShannonWestin @temkins @journeycancer @DrBeckerSchutte @MarshallTF_PhD @KDRichardson924 @uicmstp @AdrienneEcana @SGO_org @IamCervivor @drdonsdizon Congratulations #gyncsm
Dee Sparacio @womenofteal
T1 Low grade patients receive either carboplatin + paclitaxel followed by endocrine therapy or endocrine therapy alone. Endocrine therapy: letrozole , anastrozole, tamoxifen #gyncsm https://t.co/2wimorqtmh
Suzie Siegel @SuzieSiegel
T1. Different subtypes of #sarcoma are often treated differently. They are often not identified until after surgery. A woman with gyn sarcoma, which can be aggressive, may want to talk to a sarcoma medical oncologist.
Dee Sparacio @womenofteal
@Bhandoria @gyncsm @ShannonWestin @temkins @journeycancer @DrBeckerSchutte @MarshallTF_PhD @KDRichardson924 @uicmstp @AdrienneEcana @SGO_org @IamCervivor @drdonsdizon Thank you! #gyncsm
Christina Lizaso @btrfly12
Some rare types of ovarian and gyn cancer have researchers or advocates that coordinate information and help patients find each other - but not all. A struggle for all in rare disease. #gyncsm
Amanda Crowell Itliong @MIShouldTalk
I was in a low grade ovarian cancer trial for 4 years that was international. We always need more research. Now my drug is helping lots of people! #gyncsm
Dee Sparacio @womenofteal
RT @btrfly12: Some rare types of ovarian and gyn cancer have researchers or advocates that coordinate information and help patients find each other - but not all. A struggle for all in rare disease. #gyncsm
Dee Sparacio @womenofteal
RT @MIShouldTalk: I was in a low grade ovarian cancer trial for 4 years that was international. We always need more research. Now my drug is helping lots of people! #gyncsm
GYN Cancer | #GYNCSM @gyncsm
T2: Two other rare gyn cancers are vulvar and vaginal cancer. How are they diagnosed? How significant is the role of surgery? Any special treatments available for those cancers? #gyncsm
Shannon Westin @ShannonWestin
RT @gyncsm: #gyncsm is so happy to celebrate our 7th anniversary tonight. A special thanks to moderators: @ShannonWestin @temkins @journeycancer @DrBeckerSchutte This year’s guests: @MarshallTF_PhD @KDRichardson924 @UICMSTP @AdrienneEcana and Supporters: @SGO_org @IamCervivor @drdonsdizon https://t.co/QlzVGflZUu
Dee Sparacio @womenofteal
RT @gyncsm: T2: T2: Two other rare gyn cancers are vulvar and vaginal cancer. How are they diagnosed? How significant is the role of surgery? Any special treatments available for those cancers? #gyncsm
Christina Lizaso @btrfly12
A sad truth with a lot of the gynecologic cancers is that with low numbers overall and poor survival rates there are lower numbers of advocates to push for research, funding and provide support. #gyncsm
Dee Sparacio @womenofteal
RT @btrfly12: A sad truth with a lot of the gynecologic cancers is that with low numbers overall and poor survival rates there are lower numbers of advocates to push for research, funding and provide support. #gyncsm
Tobey @BRCAinfo
@gyncsm I had a friend with vaginal cancer. The very worst part was her “shame” I hated that for her. She complained of pain & itching & no one listened til it was so late stage ~ she couldn’t be helped #gyncsm
Sarah Temkin @temkins
A2: Vulvar and vaginal cancer are rare. Ask your doctor if something doesn't feel right (especially after menopause)! You might need a biopsy. Treatment is very individual based upon the site of the cancer. #gyncsm.
Christina Lizaso @btrfly12
RT @BRCAinfo: @gyncsm I had a friend with vaginal cancer. The very worst part was her “shame” I hated that for her. She complained of pain & itching & no one listened til it was so late stage ~ she couldn’t be helped #gyncsm
Nita Lee @NitaKarnikLee
@gyncsm Hi! Gyne onc @UCCancerCenter Thanks for covering wide range of cancer types for this chat! #gyncsm
Dee Sparacio @womenofteal
#gyncsm
Mutant Strong @IrinaBrooke1
@BRCAinfo @gyncsm OMG that’s so sad #gyncsm
Dee Sparacio @womenofteal
RT @temkins: A2: A2: Vulvar and vaginal cancer are rare. Ask your doctor if something doesn't feel right (especially after menopause)! You might need a biopsy. Treatment is very individual based upon the site of the cancer. #gyncsm.
Christina Lizaso @btrfly12
@BRCAinfo @gyncsm The "cancers down there" stigma is a sad addition to an already tough situation. #gyncsm
Dee Sparacio @womenofteal
@NitaKarnikLee @gyncsm @UCCancerCenter Welcome to the chat! #gyncsm
Christina Lizaso @btrfly12
RT @temkins: A2: A2: Vulvar and vaginal cancer are rare. Ask your doctor if something doesn't feel right (especially after menopause)! You might need a biopsy. Treatment is very individual based upon the site of the cancer. #gyncsm.
Shannon Westin @ShannonWestin
RT @btrfly12: A sad truth with a lot of the gynecologic cancers is that with low numbers overall and poor survival rates there are lower numbers of advocates to push for research, funding and provide support. #gyncsm
Stephanie L. Wethington, MD, MSc @DrMomOnc
RT @gyncsm: #gyncsm is so happy to celebrate our 7th anniversary tonight. A special thanks to moderators: @ShannonWestin @temkins @journeycancer @DrBeckerSchutte This year’s guests: @MarshallTF_PhD @KDRichardson924 @UICMSTP @AdrienneEcana and Supporters: @SGO_org @IamCervivor @drdonsdizon https://t.co/QlzVGflZUu
Shannon Westin @ShannonWestin
@MIShouldTalk Thank you for volunteering!! #gyncsm
Sarah Temkin @temkins
Anatomically surgical treatment might be limited by how close the bowel and/or bladder can be to the tumor. Often radiation with or without chemotherapy is recommended. #gyncsm.
Dee Sparacio @womenofteal
RT @btrfly12: @BRCAinfo @gyncsm The "cancers down there" stigma is a sad addition to an already tough situation. #gyncsm
Tobey @BRCAinfo
@btrfly12 @gyncsm Is there any protocol for testing? #gyncsm
Christina Lizaso @btrfly12
Finding providers with experience with these cancers can be tough, but can be key to overall treatment and survival per studies. #gyncsm
Shannon Westin @ShannonWestin
RT @gyncsm: Those diagnosed with rare cancers, however defined, have some common experiences and challenges. In this chat we hope you will learn a little bit about some of the rarer gynecologic cancer types. Here comes Topic 1 (T1:)... #gyncsm
Suzie Siegel @SuzieSiegel
T2. Different types of #sarcoma can also occur in the vagina (as mine did) and the vulva. When systemic therapy -- such as chemo & targeted treatment -- is needed, sarcoma is generally treated by its subtype, rather than its location in the body. #gyncsm
Dee Sparacio @womenofteal
T2 Vulvar Cancer Symptoms: A lump or growth in or on the vulvar area or groin, patch of skin differently textured or colored, Persistent itching, pain, soreness, or burning in the vulvar area @cancerdotnet #gyncsm
Mutant Strong @IrinaBrooke1
@BRCAinfo @btrfly12 @gyncsm Really good question #gyncsm
Shannon Westin @ShannonWestin
It is really important to ask your provider how many of these cases they have seen - and consider referral to a cancer center that has expertise #gyncsm
Dee Sparacio @womenofteal
RT @temkins: Anatomically surgical treatment might be limited by how close the bowel and/or bladder can be to the tumor. Often radiation with or without chemotherapy is recommended. #gyncsm.
Dee Sparacio @womenofteal
RT @btrfly12: Finding providers with experience with these cancers can be tough, but can be key to overall treatment and survival per studies. #gyncsm
Christina Lizaso @btrfly12
I feel like it is harder to find information on radiation for gyn cancers since it is a rare treatment type in ovarian cancer - one of the ones with seemingly the most patient groups. #gyncsm
Geetu Bhandoria @Bhandoria
@IJGConline @IJGCfellows @ESGO_society @ENYGO_official
Dee Sparacio @womenofteal
RT @SuzieSiegel: T2. Different types of #sarcoma can also occur in the vagina (as mine did) and the vulva. When systemic therapy -- such as chemo & targeted treatment -- is needed, sarcoma is generally treated by its subtype, rather than its location in the body. #gyncsm
Christina Lizaso @btrfly12
RT @ShannonWestin: It is really important to ask your provider how many of these cases they have seen - and consider referral to a cancer center that has expertise #gyncsm
Dee Sparacio @womenofteal
RT @ShannonWestin: It is really important to ask your provider how many of these cases they have seen - and consider referral to a cancer center that has expertise #gyncsm
Amanda Crowell Itliong @MIShouldTalk
@ShannonWestin Now I get to help others connect to trials! 💜 It’s awesome to be able to contribute to the field! I was in Dr. G’s Trametinib trial and the drug gave me 4 extra years when I was totally out of options! #gyncsm
Michele Rhee @michelerhee
@gyncsm T2: Has anyone heard of WHIM syndrome (very rare primary immunodeficiency)? I think women with WHIM syndrome can be more susceptible to HPV & refractory to HPV-related warts, & I think there were a couple of women who eventually developed vulvar / vaginal cancer. #gyncsm
Mutant Strong @IrinaBrooke1
@btrfly12 I can’t even imagine how awful radiation is for down there. #gyncsm
Tobey @BRCAinfo
@MIShouldTalk @ShannonWestin 🙏 continued good health #gyncsm
Shannon Westin @ShannonWestin
@MIShouldTalk That is such a great service - what amazing advocacy!!! So honored to know you! #gyncsm
Christina Lizaso @btrfly12
I believe only cervical cancer has a screening test for non-symptomatic. Rest are things to do based on symptoms. #gyncsm
Tobey @BRCAinfo
RT @michelerhee: @gyncsm T2: @gyncsm T2: Has anyone heard of WHIM syndrome (very rare primary immunodeficiency)? I think women with WHIM syndrome can be more susceptible to HPV & refractory to HPV-related warts, & I think there were a couple of women who eventually developed vulvar / vaginal cancer. #gyncsm
Cancer Care News @CancerCare_News
RT @gyncsm: #gyncsm is so happy to celebrate our 7th anniversary tonight. A special thanks to moderators: @ShannonWestin @temkins @journeycancer @DrBeckerSchutte This year’s guests: @MarshallTF_PhD @KDRichardson924 @UICMSTP @AdrienneEcana and Supporters: @SGO_org @IamCervivor @drdonsdizon https://t.co/QlzVGflZUu
Amanda Crowell Itliong @MIShouldTalk
@ShannonWestin Right back at you! We still have so much work to do to make trials an option for everyone who could benefit. #gyncsm
Christina Lizaso @btrfly12
...and with cervical cancer, the pap can miss the rarer type - which I think HPV testing does better at catching #gyncsm
Dee Sparacio @womenofteal
RT @MIShouldTalk: @ShannonWestin Now I get to help others connect to trials! 💜 It’s awesome to be able to contribute to the field! I was in Dr. G’s Trametinib trial and the drug gave me 4 extra years when I was totally out of options! #gyncsm
Nita Lee @NitaKarnikLee
@gyncsm #gyncsm
Dee Sparacio @womenofteal
RT @michelerhee: @gyncsm T2: @gyncsm T2: Has anyone heard of WHIM syndrome (very rare primary immunodeficiency)? I think women with WHIM syndrome can be more susceptible to HPV & refractory to HPV-related warts, & I think there were a couple of women who eventually developed vulvar / vaginal cancer. #gyncsm
Shannon Westin @ShannonWestin
@DSolit @btrfly12 One good thing that has come out of these troubling times...#gyncsm
GYN Cancer | #GYNCSM @gyncsm
T3: Last month we talked about endometrial cancer. How does uterine sarcoma differ from other cancers of the uterus? #gyncsm
Suzie Siegel @SuzieSiegel
@temkins Due to surgery and radiation, I ended up with both a colostomy & a urostomy. #gyncsm
Dee Sparacio @womenofteal
#gyncsm
Sarah Temkin @temkins
Totally. #gyncsm.
Mutant Strong @IrinaBrooke1
@MIShouldTalk @ShannonWestin That’s wonderful news . #gyncsm
Dee Sparacio @womenofteal
RT @temkins: Totally. #gyncsm.
Dee Sparacio @womenofteal
RT @gyncsm: T3: T3: Last month we talked about endometrial cancer. How does uterine sarcoma differ from other cancers of the uterus? #gyncsm
Shannon Westin @ShannonWestin
So true - I teach our trainees, when in doubt - biopsy. Vulvar cancer can look very different for each patient. Better to be conservative! #gyncsm
Mutant Strong @IrinaBrooke1
@SuzieSiegel @temkins I’m so sorry to here this. #gyncsm
Dee Sparacio @womenofteal
#gyncsm
Dee Sparacio @womenofteal
RT @ShannonWestin: So true - I teach our trainees, when in doubt - biopsy. Vulvar cancer can look very different for each patient. Better to be conservative! #gyncsm
Christina Lizaso @btrfly12
T3: Thanks to @SuzieSiegel we have these resources listed on the #gyncsm blog: Uterine Carcinosarcoma https://t.co/5npQmY97Os Endometrial Stromal Sarcoma https://t.co/oQ4N8vXFq7 Leiomyosarcoma: https://t.co/vvwgJLTPSa and https://t.co/xQH22a6hTX
Shannon Westin @ShannonWestin
RT @btrfly12: T3: T3: Thanks to @SuzieSiegel we have these resources listed on the #gyncsm blog: Uterine Carcinosarcoma https://t.co/5npQmY97Os Endometrial Stromal Sarcoma https://t.co/oQ4N8vXFq7 Leiomyosarcoma: https://t.co/vvwgJLTPSa and https://t.co/xQH22a6hTX
Michele Rhee @michelerhee
@gyncsm T2: There's a no-cost genetic test for anyone who thinks they might have WHIM syndrome: https://t.co/OoZQHxzpJH. The criteria are related to neutropenia/primary immunodeficiency, but I feel like if you have vulvar/vaginal cx, it might be of interest too! #gyncsm
Dee Sparacio @womenofteal
RT @btrfly12: T3: T3: Thanks to @SuzieSiegel we have these resources listed on the #gyncsm blog: Uterine Carcinosarcoma https://t.co/5npQmY97Os Endometrial Stromal Sarcoma https://t.co/oQ4N8vXFq7 Leiomyosarcoma: https://t.co/vvwgJLTPSa and https://t.co/xQH22a6hTX
Christina Lizaso @btrfly12
T3: Also for sarcomas overall: https://t.co/6zZgEjTgMk and https://t.co/aAYQVyiINx #gyncsm
Sarah Temkin @temkins
A3: Most cancers of the uterus arise from the endometrium. But sarcomas typically arise from the myometrium - either the muscle or the "glue" of the uterus. #gyncsm. https://t.co/TK8YoTqlSl
Christina Lizaso @btrfly12
RT @michelerhee: @gyncsm T2: There's a no-cost genetic test for anyone who thinks they might have WHIM syndrome: @gyncsm T2: There's a no-cost genetic test for anyone who thinks they might have WHIM syndrome: https://t.co/OoZQHxzpJH. The criteria are related to neutropenia/primary immunodeficiency, but I feel like if you have vulvar/vaginal cx, it might be of interest too! #gyncsm
Christina Lizaso @btrfly12
RT @womenofteal: #gyncsm
Christina Lizaso @btrfly12
RT @ShannonWestin: So true - I teach our trainees, when in doubt - biopsy. Vulvar cancer can look very different for each patient. Better to be conservative! #gyncsm
Amanda Crowell Itliong @MIShouldTalk
I reviewed all the research on my rare subtype and then went to see the dude who was primary author on most everything. He showed me my best options based on research and experience. #gyncsm
Christina Lizaso @btrfly12
RT @womenofteal: #gyncsm
Dee Sparacio @womenofteal
I learned that MMMT malignant mixed mesodermal tumor was Uterine Carcinosarcoma #gyncsm
Suzie Siegel @SuzieSiegel
I'm retweeting this to show you the variety in gyn #sarcomas. #gyncsm
Dee Sparacio @womenofteal
RT @michelerhee: @gyncsm T2: There's a no-cost genetic test for anyone who thinks they might have WHIM syndrome: @gyncsm T2: There's a no-cost genetic test for anyone who thinks they might have WHIM syndrome: https://t.co/OoZQHxzpJH. The criteria are related to neutropenia/primary immunodeficiency, but I feel like if you have vulvar/vaginal cx, it might be of interest too! #gyncsm
Dee Sparacio @womenofteal
RT @btrfly12: T3: T3: Also for sarcomas overall: https://t.co/6zZgEjTgMk and https://t.co/aAYQVyiINx #gyncsm
Dee Sparacio @womenofteal
RT @temkins: A3: A3: Most cancers of the uterus arise from the endometrium. But sarcomas typically arise from the myometrium - either the muscle or the "glue" of the uterus. #gyncsm. https://t.co/TK8YoTqlSl
Sarah Temkin @temkins
RT @SuzieSiegel: I'm retweeting this to show you the variety in gyn #sarcomas. #gyncsm
Christina Lizaso @btrfly12
@MIShouldTalk Wow! Amazing. When diagnosed, dig in and reach out. Thanks for then paying it forward. #gyncsm
Dee Sparacio @womenofteal
@MIShouldTalk Love how you researched advocated for your best treatment . #gyncsm
Dee Sparacio @womenofteal
RT @SuzieSiegel: I'm retweeting this to show you the variety in gyn #sarcomas. #gyncsm
Suzie Siegel @SuzieSiegel
@btrfly12 We also have hundreds of women with uterine #leiomyosarcoma on the Facebook page for https://t.co/p0wVqj4ZkB. #gyncsm
Michele Rhee @michelerhee
@gyncsm T2: Actually, anyone who has an HPV-related cancer & neutropenia might want to take a look at this no-cost genetic test: https://t.co/OoZQHxzpJH. Like, if you have WHIM syndrome (CXCR4 mutation), I think it would explain why your warts kept coming back. #gyncsm
Dee Sparacio @womenofteal
T3 From a @smartpatients survivor : "I am confused as to treatment differences (if any) between uterine carcinosarcoma and ovarian carcinosarcoma. Can you clarify? " #gyncsm
Shannon Westin @ShannonWestin
I am so glad you were able to do that - I hope that with expanding virtual capabilities (as mentioned by @DSolit) will allow more patients to see experts without travel/cost/lost wages/etc #gyncsm
GYN Cancer | #GYNCSM @gyncsm
T4: In the past we have talked about ovarian cancer developing in the fallopian tubes yet there is also a fallopian tube cancer. Does it differ from ovarian? Do treatments differ? #gyncsm
Amanda Crowell Itliong @MIShouldTalk
@SuzieSiegel @btrfly12 Thanks so much for teaching me more about this! #gyncsm
Dee Sparacio @womenofteal
@SuzieSiegel @btrfly12 Great resources - thanks! #gyncsm
Michele Rhee @michelerhee
@MIShouldTalk You're amazing. I joined two natural history studies for my ultra-rare disease and then buried my head in the sand because there aren't treatments in development. You're a rockstar advocate for yourself & others. #gyncsm
Dee Sparacio @womenofteal
#gyncsm
GYN Cancer | #GYNCSM @gyncsm
#gyncsm
Shannon Westin @ShannonWestin
In general, fallopian tube cancers are treated just like #ovariancancer - similar surgery, chemotherapy, and targeted therapy options #gyncsm
Tobey @BRCAinfo
RT @ShannonWestin: In general, fallopian tube cancers are treated just like #ovariancancer - similar surgery, chemotherapy, and targeted therapy options #gyncsm
Dee Sparacio @womenofteal
RT @ShannonWestin: In general, fallopian tube cancers are treated just like #ovariancancer - similar surgery, chemotherapy, and targeted therapy options #gyncsm
GYN Cancer | #GYNCSM @gyncsm
@ladi_land Welcome - use #gyncsm if you want others to see your tweets. :) Here are some PPC resources: https://t.co/vyEoOJtB7B https://t.co/DVdmDivdmy
Sarah Temkin @temkins
@gyncsm Fallopian tube, ovarian and primary peritoneal cancer should be bundled by their histologic appearance (how they look under the microscope) rather than the site at which the tumor is identified. If you look hard enough most ovarian cancers will have originated in the tube #gyncsm
Dee Sparacio @womenofteal
T4 This gives a good overview of Treatments for Fallopian tube cancer #gyncsm https://t.co/OVTjDRZtOk
Erica Bednar @EMBOSU
Some rare subtypes of ovarian cancer may be associated w/ (also rare) hereditary cancer syndromes while other rare subtypes have no known hereditary cause. Ask your healthcare team if you should meet w/ a genetic counselor for a hereditary cancer risk assessment #gyncsm
GYN Cancer | #GYNCSM @gyncsm
#gyncsm
Dee Sparacio @womenofteal
RT @temkins: @gyncsm Fallopian tube, ovarian and primary peritoneal cancer should be bundled by their histologic appearance (how they look under the microscope) rather than the site at which the tumor is identified. If you look hard enough most ovarian cancers will have originated in the tube #gyncsm
GYN Cancer | #GYNCSM @gyncsm
T5: What is Gestational Trophoblastic Disease or Neoplasm? Are there symptoms? What are the best treatments? #gyncsm
Dee Sparacio @womenofteal
RT @EMBOSU: Some rare subtypes of ovarian cancer may be associated w/ (also rare) hereditary cancer syndromes while other rare subtypes have no known hereditary cause. Ask your healthcare team if you should meet w/ a genetic counselor for a hereditary cancer risk assessment #gyncsm
Dee Sparacio @womenofteal
RT @gyncsm: #gyncsm
GYN Cancer | #GYNCSM @gyncsm
#gyncsm
Tobey @BRCAinfo
@temkins @gyncsm I thought peritoneal cancer started in the abdomen ~ that’s why #brca mutation people are still at risk. No? #gyncsm
GYN Cancer | #GYNCSM @gyncsm
#gyncsm
Dee Sparacio @womenofteal
RT @gyncsm: T5: T5: What is Gestational Trophoblastic Disease or Neoplasm? Are there symptoms? What are the best treatments? #gyncsm
Grey Genetics @GreyGenetics
RT @EMBOSU: Some rare subtypes of ovarian cancer may be associated w/ (also rare) hereditary cancer syndromes while other rare subtypes have no known hereditary cause. Ask your healthcare team if you should meet w/ a genetic counselor for a hereditary cancer risk assessment #gyncsm
Tobey @BRCAinfo
@gyncsm T5 abnormalcell growth in the womb #gyncsm
Mutant Strong @IrinaBrooke1
@BRCAinfo @temkins @gyncsm It’s in the peritoneal. It’s in the the lining I believe. #gyncsm
EcanaAdrienne @AdrienneEcana
RT @gyncsm: #gyncsm
EcanaAdrienne @AdrienneEcana
RT @gyncsm: #gyncsm
Dee Sparacio @womenofteal
T5 via @DanaFarber there are 3 types of GTD : Hydatidiform mole, or molar pregnancy, Choriocarcinoma, Placental-site and epithelioid trophoblastic tumors #gyncsm
Suzie Siegel @SuzieSiegel
Resources for women with gyn #cancer may have little or no info on #sarcoma. For example, I just searched the @GYNcancer site for "sarcoma" & found only 2 patient stories, but no other info. Aren't we women, too? #gyncsm
Amanda Crowell Itliong @MIShouldTalk
The toughest thing I’ve run into with rare disease is that even experts don’t necessarily know what things look like. Low grade ovarian is rare and ovarian to the brain is rare so what does low grade to the brain look like? Is mine metastasis or unrelated? #gyncsm
Eleanor Griffith, MS, CGC @elo81
RT @EMBOSU: Some rare subtypes of ovarian cancer may be associated w/ (also rare) hereditary cancer syndromes while other rare subtypes have no known hereditary cause. Ask your healthcare team if you should meet w/ a genetic counselor for a hereditary cancer risk assessment #gyncsm
Christina Lizaso @btrfly12
RT @MIShouldTalk: The toughest thing I’ve run into with rare disease is that even experts don’t necessarily know what things look like. Low grade ovarian is rare and ovarian to the brain is rare so what does low grade to the brain look like? Is mine metastasis or unrelated? #gyncsm
Dee Sparacio @womenofteal
RT @MIShouldTalk: The toughest thing I’ve run into with rare disease is that even experts don’t necessarily know what things look like. Low grade ovarian is rare and ovarian to the brain is rare so what does low grade to the brain look like? Is mine metastasis or unrelated? #gyncsm
Tobey @BRCAinfo
@temkins @gyncsm I see. Thank you for clarifying #gyncsm
Christina Lizaso @btrfly12
#gyncsm
Suzie Siegel @SuzieSiegel
@BRCAinfo @temkins @gyncsm Btw, some women with gyn #leiomyosarcoma have BRCA mutations. #gyncsm
Michele Rhee @michelerhee
@MIShouldTalk In rare disease, *you* are the expert on *your* disease. #gyncsm
Tobey @BRCAinfo
RT @SuzieSiegel: @BRCAinfo @temkins @gyncsm Btw, some women with gyn #leiomyosarcoma have BRCA mutations. #gyncsm
Dee Sparacio @womenofteal
#gyncsm
Christina Lizaso @btrfly12
@IrinaBrooke1 @BRCAinfo @temkins @gyncsm #gyncsm Even if you've had your ovaries removed, you could be at risk for PPC as it is related to the lining.
Ross Harrison, MD MPH @RossFH
@gyncsm Gestational trophoblastic disease is an abnormal growth & development of the cells that usually form the placenta during pregnancy. The most common initial symptoms are heavy bleeding early in pregnancy. #gyncsm
Sarah Temkin @temkins
@btrfly12 @IrinaBrooke1 @BRCAinfo @gyncsm True. #gyncsm.
Nita Lee @NitaKarnikLee
@womenofteal @SmartPatients #gyncsm The cell types under microscope look same; often chemotherapy can be similar. historically trials that were for ovarian cancer may have excluded carcinosarc but trials for uterine carcinosarcoma allowed ovarian carcinosarcoma
Amanda Crowell Itliong @MIShouldTalk
RT @michelerhee: @MIShouldTalk In rare disease, *you* are the expert on *your* disease. #gyncsm
Dee Sparacio @womenofteal
Totally Agree! #gyncsm
Christina Lizaso @btrfly12
#gyncsm removing the fallopian tubes when having other types of gyn surgery is a consideration (among many factors) to possibly reduce ovarian cancer risk
Dee Sparacio @womenofteal
RT @btrfly12: @IrinaBrooke1 @BRCAinfo @temkins @gyncsm #gyncsm Even if you've had your ovaries removed, you could be at risk for PPC as it is related to the lining.
Dee Sparacio @womenofteal
RT @RossFH: @gyncsm Gestational trophoblastic disease is an abnormal growth & development of the cells that usually form the placenta during pregnancy. The most common initial symptoms are heavy bleeding early in pregnancy. #gyncsm
Suzie Siegel @SuzieSiegel
@michelerhee @MIShouldTalk Respectfully, I want a doctor who knows more than I do. I hope anyone diagnosed with gyn #sarcoma will go to a comprehensive sarcoma center. #gyncsm https://t.co/FKyTeKxEd5
Christina Lizaso @btrfly12
RT @NitaKarnikLee: @womenofteal @SmartPatients #gyncsm The cell types under microscope look same; often chemotherapy can be similar. historically trials that were for ovarian cancer may have excluded carcinosarc but trials for uterine carcinosarcoma allowed ovarian carcinosarcoma
Christina Lizaso @btrfly12
RT @RossFH: @gyncsm Gestational trophoblastic disease is an abnormal growth & development of the cells that usually form the placenta during pregnancy. The most common initial symptoms are heavy bleeding early in pregnancy. #gyncsm
Dee Sparacio @womenofteal
RT @NitaKarnikLee: @womenofteal @SmartPatients #gyncsm The cell types under microscope look same; often chemotherapy can be similar. historically trials that were for ovarian cancer may have excluded carcinosarc but trials for uterine carcinosarcoma allowed ovarian carcinosarcoma
Christina Lizaso @btrfly12
RT @michelerhee: @MIShouldTalk In rare disease, *you* are the expert on *your* disease. #gyncsm
Dee Sparacio @womenofteal
RT @btrfly12: #gyncsm removing the fallopian tubes when having other types of gyn surgery is a consideration (among many factors) to possibly reduce ovarian cancer risk
Dee Sparacio @womenofteal
RT @SuzieSiegel: @michelerhee @MIShouldTalk Respectfully, I want a doctor who knows more than I do. I hope anyone diagnosed with gyn #sarcoma will go to a comprehensive sarcoma center. #gyncsm https://t.co/FKyTeKxEd5
Sarah Temkin @temkins
A5: Gestational trophoblastic disease is a neoplasm arising from the placenta. For some women this will resolve with time, others need treatment with chemotherapy. #gyncsm
Dee Sparacio @womenofteal
T6 Here is an Article by @dorcarvajal on living with primary peritoneal. #gyncsm https://t.co/vVwU3qAC49
Emily K. Drake #AYACSM @EK_Drake
RT @michelerhee: @MIShouldTalk In rare disease, *you* are the expert on *your* disease. #gyncsm
Dee Sparacio @womenofteal
RT @temkins: A5: A5: Gestational trophoblastic disease is a neoplasm arising from the placenta. For some women this will resolve with time, others need treatment with chemotherapy. #gyncsm
Dr. Indira Mysorekar @MysorekarLab
RT @temkins: A3: A3: Most cancers of the uterus arise from the endometrium. But sarcomas typically arise from the myometrium - either the muscle or the "glue" of the uterus. #gyncsm. https://t.co/TK8YoTqlSl
Suzie Siegel @SuzieSiegel
I have nothing against gyn oncologists, of course. I see one as my primary oncologist. But all women with gyn #sarcoma should have the ability to consult with a sarcoma medical oncologist, too. As advocates, we had to fight some of the big cancer centers to allow this.
GYN Cancer | #GYNCSM @gyncsm
#gyncsm re: Gestational Trophoblastic Disease
Dr. Indira Mysorekar @MysorekarLab
RT @temkins: A2: A2: Vulvar and vaginal cancer are rare. Ask your doctor if something doesn't feel right (especially after menopause)! You might need a biopsy. Treatment is very individual based upon the site of the cancer. #gyncsm.
Dr. Indira Mysorekar @MysorekarLab
RT @temkins: Anatomically surgical treatment might be limited by how close the bowel and/or bladder can be to the tumor. Often radiation with or without chemotherapy is recommended. #gyncsm.
Dr. Indira Mysorekar @MysorekarLab
RT @temkins: A1: A1: With increased molecular information #ovariancancer has been subdivided into many "types" many of which are considered rare. Treatment may differ based on the type. This is not even getting to molecular subtyping! #gyncsm https://t.co/lRMqlaLBs2
Dee Sparacio @womenofteal
RT @gyncsm: #gyncsm re: #gyncsm re: Gestational Trophoblastic Disease
Suzie Siegel @SuzieSiegel
#gyncsm
Shannon Westin @ShannonWestin
You are absolutely right! Our team @MDAndersonNews works alongside the Sarcoma Medical Oncology team to provide comprehensive care for women with #sarcoma #gyncsm @PamSolimanMD @nicoleflemingmd
GYN Cancer | #GYNCSM @gyncsm
#gyncsm
Amanda Crowell Itliong @MIShouldTalk
#Gyncsm
GYN Cancer | #GYNCSM @gyncsm
#gyncsm
Dee Sparacio @womenofteal
RT @ShannonWestin: You are absolutely right! Our team @MDAndersonNews works alongside the Sarcoma Medical Oncology team to provide comprehensive care for women with #sarcoma #gyncsm @PamSolimanMD @nicoleflemingmd
GYN Cancer | #GYNCSM @gyncsm
#gyncsm
Christina Lizaso @btrfly12
#gyncsm
Dee Sparacio @womenofteal
@SuzieSiegel My cancer center has sarcoma specialists and gyn oncs work together to find the right treatment. #gyncsm
Ross Harrison, MD MPH @RossFH
@gyncsm If this happens, GTN can be treated with chemotherapy (often methotrexate). In fact, GTN was one of the first cancers even to be successfully treated with chemotherapy. #gyncsm
Nicole D. Fleming MD @nicoleflemingmd
RT @ShannonWestin: You are absolutely right! Our team @MDAndersonNews works alongside the Sarcoma Medical Oncology team to provide comprehensive care for women with #sarcoma #gyncsm @PamSolimanMD @nicoleflemingmd
Dee Sparacio @womenofteal
#gyncsm
Dee Sparacio @womenofteal
RT @RossFH: @gyncsm If this happens, GTN can be treated with chemotherapy (often methotrexate). In fact, GTN was one of the first cancers even to be successfully treated with chemotherapy. #gyncsm
Sarah Temkin @temkins
@ShannonWestin @MDAndersonNews @PamSolimanMD @nicoleflemingmd Gosh everywhere, doctors and patients should be trying to get the right treatment to the right person at the right time. #gyncsm.
GYN Cancer | #GYNCSM @gyncsm
..we already have been taking about T6: Primary peritoneal cancer is treated like ovarian cancer. How do they differ? so here also is: T7: What are the challenges of having a rare type of cancer? What are some tips and resources when dealing with a rare cancer? #gyncsm
Michele Rhee @michelerhee
@elo81 @SuzieSiegel @MIShouldTalk I went to the world expert for my rare disease (not #gyncsm, but one that can lead to one) & hated the care. The follow up & care from my PCP (who studied up & asked questions) was phenomenal & personalized. & I'm still alive >15 years later!
Dr. Indira Mysorekar @MysorekarLab
Please check out this tutorial from #Lifesaver @temkins #gynonc #GynaeCancerAwareness #WomensHealth @WomxnsHC
GYN Cancer | #GYNCSM @gyncsm
Sorry, realized I forgot the #gyncsm on that last Topic tweet until just now. Reminder for all of us to include #gyncsm in each tweet :)
Eleanor Griffith, MS, CGC @elo81
@michelerhee @SuzieSiegel @MIShouldTalk love this... the PCP part that is! #gyncsm
Nita Lee @NitaKarnikLee
RT @btrfly12: T1: T1: Women are diagnosed with a cancer almost no one talks about – then find out there are all these types and sub-types and it gets confusing very fast. When I found out about my genetic mutation I thought that was it – nope, the spiral always goes deeper. #gyncsm
Eleanor Griffith, MS, CGC @elo81
@SuzieSiegel @michelerhee @MIShouldTalk #gyncsm ;o
Mutant Strong @IrinaBrooke1
@michelerhee @elo81 @SuzieSiegel @MIShouldTalk Isn’t it amazing when you have a passionate Dr who wants to help his/her patients. #gyncsm
Dee Sparacio @womenofteal
T7 Challenge- Finding other patients with the same dx to offer advice and support. When I was initially dx I had trouble finding another Stage 3 OC patient to talk to. Thankfully I reach out to @CancerHopeNet and made my first connection. #gyncsm
Christina Lizaso @btrfly12
I think many of us are proponents of shared-decision making and collaboration between doctor and patient. You want a specialist with knowledge of your type of #gyncsm but you also want one that recognizes you know your body and your exact experience/goals best.
Sarah Temkin @temkins
Rarely, this is a lifethreatening disease. Multidrug chemotherapy is prescribed, sometimes with radiation. Choriocarcinoma can be diagnosed anytime after a pregnancy (normal or miscarriage) and the diagnosis can be tricky. #gyncsm.
Christina Lizaso @btrfly12
RT @womenofteal: T7 Challenge- Finding other patients with the same dx to offer advice and support. When I was initially dx I had trouble finding another Stage 3 OC patient to talk to. Thankfully I reach out to @CancerHopeNet and made my first connection. #gyncsm
Tobey @BRCAinfo
RT @btrfly12: I think many of us are proponents of shared-decision making and collaboration between doctor and patient. You want a specialist with knowledge of your type of #gyncsm but you also want one that recognizes you know your body and your exact experience/goals best.
Dee Sparacio @womenofteal
@gyncsm I've been doing that too and forgeting T?. #gyncsm
Ross Harrison, MD MPH @RossFH
@gyncsm GTD — also know and complete or partial molar pregnancies — develops after 1-3 per 1000 pregnancies. The main risks include maternal age (both older and younger) and if the person has ever experienced GTD before. #gyncsm
Christina Lizaso @btrfly12
RT @womenofteal: T6 Here is an Article by @dorcarvajal on living with primary peritoneal. #gyncsm https://t.co/vVwU3qAC49
Dee Sparacio @womenofteal
@elo81 @michelerhee @SuzieSiegel @MIShouldTalk Me too. My PCP visited me after my surgery. And asks at every visit about my latest CA-125 or scan. #gyncsm
Dee Sparacio @womenofteal
RT @temkins: Rarely, this is a lifethreatening disease. Multidrug chemotherapy is prescribed, sometimes with radiation. Choriocarcinoma can be diagnosed anytime after a pregnancy (normal or miscarriage) and the diagnosis can be tricky. #gyncsm.
Eleanor Griffith, MS, CGC @elo81
@womenofteal @michelerhee @SuzieSiegel @MIShouldTalk jealous! never been to a doctor i really wanted to see again, heh #gyncsm
Mutant Strong @IrinaBrooke1
@RossFH @gyncsm Lovely chemo refining😒. Sorry brings back bad memories from my cmf chemo regimen. #gyncsm
Dee Sparacio @womenofteal
RT @RossFH: @gyncsm GTD — also know and complete or partial molar pregnancies — develops after 1-3 per 1000 pregnancies. The main risks include maternal age (both older and younger) and if the person has ever experienced GTD before. #gyncsm
GYN Cancer | #GYNCSM @gyncsm
Ran out of time for closing thoughts but feel like we covered a lot of ground on rare gyn cancers. (feel free to still add your Today I Learned TIL:) Thanks to everyone who joined along and shared. #gyncsm
GYN Cancer | #GYNCSM @gyncsm
We will not be chatting in October but look forward to seeing you on November 11 at 9pm ET when @LHavrilesky @ShelbyDReed will be joining us to get input for a shared decision aid re: ovarian cancer and PARP inhibitors. Wishing wellness and safety for all! #gyncsm
Mutant Strong @IrinaBrooke1
@gyncsm Thanks for doing this. It was a really informative #gyncsm.
Dee Sparacio @womenofteal
RT @gyncsm: We will not be chatting in October but look forward to seeing you on November 11 at 9pm ET when @LHavrilesky @ShelbyDReed will be joining us to get input for a shared decision aid re: ovarian cancer and PARP inhibitors. Wishing wellness and safety for all! #gyncsm
Jon Trent, MD, PhD @JTrentMDPhD
RT @SuzieSiegel: I'm retweeting this to show you the variety in gyn #sarcomas. #gyncsm
Tobey @BRCAinfo
Til #gyncsm re: peritoneal cancer. Thank you everyone. Stay healthy & safe https://t.co/aLDBN7rKaU
GYN Cancer | #GYNCSM @gyncsm
As always, remember to tweet things of interest with hashtag #gyncsm to keep the conversation going between chats. We appreciate so much many of you on this chat tonight who do.
Dee Sparacio @womenofteal
Grateful for our #gyncsm co-moderators! @btrfly12 @ShannonWestin @temkins @journeycancer @DrBeckerSchutte
Dee Sparacio @womenofteal
Remember to check https://t.co/Df2f7Okp35 for a transcript of the chat and resources #gyncsm
Suzie Siegel @SuzieSiegel
@womenofteal @CancerHopeNet T7. I reached out to @MDAndersonNews' MyCancerConnection but they had no one for me to speak to. So, I signed up so that wouldn't happen to another woman. I think that was 2002. #gyncsm
Mutant Strong @IrinaBrooke1
@SuzieSiegel @btrfly12 I’m really sorry. #gyncsm
Dee Sparacio @womenofteal
@barbaratretter @gyncsm Hi Barbara. So glad you joined us! #gyncsm
Dee Sparacio @womenofteal
@SuzieSiegel @IrinaBrooke1 @btrfly12 You have dealt with so much - thank you for all your advocacy work. I know I learned from your posts tonight. #gyncsm
Christina Lizaso @btrfly12
When dealing with rare, I'm so grateful for patient communities and the internet to help those rare find each other. I also think that women with all the different #gyncsm cancers can still be of great support to one another across types and subtypes :)
Shannon Westin @ShannonWestin
RT @temkins: @ShannonWestin @MDAndersonNews @PamSolimanMD @nicoleflemingmd Gosh everywhere, doctors and patients should be trying to get the right treatment to the right person at the right time. #gyncsm.
Marni Cartelli @Purrfectly_Rare
RT @michelerhee: @gyncsm T2: @gyncsm T2: Actually, anyone who has an HPV-related cancer & neutropenia might want to take a look at this no-cost genetic test: https://t.co/OoZQHxzpJH. Like, if you have WHIM syndrome (CXCR4 mutation), I think it would explain why your warts kept coming back. #gyncsm
Mutant Strong @IrinaBrooke1
@womenofteal @SuzieSiegel @btrfly12 💗 #gyncsm
Shannon Westin @ShannonWestin
Thank you Dee and Christina!! xoxo #gyncsm
Barbara Solit, MBA @BarbaraSolit
@womenofteal @CancerHopeNet Facebook has 2 groups for ovarian germ cell patients - Germ Cell Ovarian Cancer Support Group and Germ Cell Tumor Parent Network. #gyncsm
Mutant Strong @IrinaBrooke1
@btrfly12 Agreed #gyncsm
Nita Lee @NitaKarnikLee
@btrfly12 #gyncsm well said!
Dee Sparacio @womenofteal
A special shout out to my co-founder @btrfly12 for these past 7 years. Thank you from the bottom of my heart for all you do to help our #gyncsm community I couldn't have asked for a better partner.
GYN Cancer | #GYNCSM @gyncsm
So grateful to everyone who joined and shared their knowledge and experiences with rare gyn cancers. #gyncsm
Dee Sparacio @womenofteal
RT @btrfly12: When dealing with rare, I'm so grateful for patient communities and the internet to help those rare find each other. I also think that women with all the different #gyncsm cancers can still be of great support to one another across types and subtypes :)
Dee Sparacio @womenofteal
RT @BarbaraSolit: @womenofteal @CancerHopeNet Facebook has 2 groups for ovarian germ cell patients - Germ Cell Ovarian Cancer Support Group and Germ Cell Tumor Parent Network. #gyncsm
David B. Solit, MD @DSolit
RT @BarbaraSolit: @womenofteal @CancerHopeNet Facebook has 2 groups for ovarian germ cell patients - Germ Cell Ovarian Cancer Support Group and Germ Cell Tumor Parent Network. #gyncsm
Dee Sparacio @womenofteal
RT @gyncsm: So grateful to everyone who joined and shared their knowledge and experiences with rare gyn cancers. #gyncsm
Dee Sparacio @womenofteal
Stay well All. See you for our November chat ! And tweeting using #gyncsm in the mean time.
Georgia @_GeorgiaHurst
RT @LguzzardiM: #Ovariancancer predisposition beyond #BRCA genes: #Ovariancancer predisposition beyond #BRCA genes: #Lynchsyndrome #TP53 #STK11 #CHEK2 #RAD51 #BRIP1 & #PALB2 #hereditarycancer #gyncsm #genetics #cancerresearch #ovariancancerawareness #WomensHealth https://t.co/9seZWDDisU
Christina Lizaso @btrfly12
Thank you Dee for all you do as a cancer research advocate, blogger, reviewer, etc! and also for your amazing research, prep and commitment to the #gyncsm community. Love working with you.
Suzie Siegel @SuzieSiegel
@MIShouldTalk People with #sarcoma often have to travel to see a specialist. Telemedicine has been a great help for those who don't have the money. #gyncsm
Christina Lizaso @btrfly12
RT @SuzieSiegel: @MIShouldTalk People with #sarcoma often have to travel to see a specialist. Telemedicine has been a great help for those who don't have the money. #gyncsm
Christina Lizaso @btrfly12
@SuzieSiegel @MIShouldTalk Let's hope some telemedicine barriers have been busted down for good since it has potential to help so many w/ rare disease. #gyncsm
Tobey @BRCAinfo
RT @btrfly12: Thank you Dee for all you do as a cancer research advocate, blogger, reviewer, etc! and also for your amazing research, prep and commitment to the #gyncsm community. Love working with you.
Tobey @BRCAinfo
RT @womenofteal: A special shout out to my co-founder @btrfly12 for these past 7 years. Thank you from the bottom of my heart for all you do to help our #gyncsm community I couldn't have asked for a better partner.
Christina Lizaso @btrfly12
#gyncsm
Christina Lizaso @btrfly12
#gyncsm
Dee Sparacio @womenofteal
RT @btrfly12: Thank you Dee for all you do as a cancer research advocate, blogger, reviewer, etc! and also for your amazing research, prep and commitment to the #gyncsm community. Love working with you.
Amanda Crowell Itliong @MIShouldTalk
RT @btrfly12: @SuzieSiegel @MIShouldTalk Let's hope some telemedicine barriers have been busted down for good since it has potential to help so many w/ rare disease. #gyncsm
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