#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 #gyncsm |
 | Dee Sparacio @womenofteal RT @gyncsm: Welcome to #gyncsm - a passionate community of gynecologic cancer survivors, caregivers, advocates and health care providers. |
| GYN Cancer | #GYNCSM @gyncsm Our health care moderators are @ShannonWestin @DrMarkham @journeycancer and our mental health moderator @DrBeckerSchutte #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: Our health care moderators are @ShannonWestin @DrMarkham @journeycancer and our mental health moderator @DrBeckerSchutte #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm We start out with introductions - Please take a moment to introduce yourself. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: We start out with introductions - Please take a moment to introduce yourself. #gyncsm |
 | Robin Martinez @RobinSmrtPtient Hi, Robin here from https://t.co/Vn6IUq0QAi where the #gyncsm discussions continue 24/7. |
| Dee Sparacio @womenofteal Dee here! Dx #ovca Stage3B 2005, 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 |
| 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. #gyncsm |
 | Rick Boulay,MD @journeycancer Hi everyone. Rick Boulay MD Gyn Oncologist. Allentown PA Nice to see everyone. #gyncsm |
| 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. #gyncsm |
 | Erica Bednar @EMBOSU Hi all! I'm Erica, and I am a genetic counselor with a focus on inherited gynecologic cancers at @MDAndersonNews #gyncsm #endcancer https://t.co/o9RJ5s1ViY |
| GYN Cancer | #GYNCSM @gyncsm Pls continue intro's and welcomes - we'll start in w/ the "ground rules" :) #gyncsm |
 | Christian Sinclair, MD, FAAHPM @ctsinclair 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. #gyncsm |
 | Dr. Heidi Donovan @HeidiSDonovan Heidi Donovan - nurse, symptom management advocate and researcher from University of Pittsburgh. Glad to be here with everyone. #gyncsm |
| Dee Sparacio @womenofteal @EMBOSU @MDAndersonNews Hi Erica so happy you are joining us. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: Pls continue intro's and welcomes - we'll start in w/ the "ground rules" :) #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 @HeidiSDonovan Hello Heidi - Thanks for joining us. #gyncsm |
| 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 @HeidiSDonovan Welcome :) #gyncsm |
| Erica Bednar @EMBOSU @womenofteal @MDAndersonNews Hi Dee! Glad I could join...crazy to think that this is the last chat of 2017! #gyncsm |
| Dee Sparacio @womenofteal Today's chat is solely informational & not a substitute for speaking w/ a doctor who's familiar w/your medical needs & history. #gyncsm |
| Christina Lizaso @btrfly12 @HPVCervicalCncr Great to have you hear. Thanks for all you do as an advocate. #gyncsm |
| Dee Sparacio @womenofteal @EMBOSU @MDAndersonNews Time has flown by. Lots of great chats planned for next year too. #gyncsm |
 | Enlightening Results 💡 @GraceCordovano Hi #gyncsm! Grace, private cancer patient advocate, joining from absolutely freezing NJ 🌬 |
| Dee Sparacio @womenofteal Remember- Twitter is an open social network & posts are public.Use a DM to exchange email addresses/personal info #gyncsm |
| Enlightening Results 💡 @GraceCordovano RT @womenofteal: Beware! my chat stream will be filled with #gyncsm tweets in about 5 minutes . Join in all ...are welcome #bcsm, #lcsm, #btsm #ayacsm https://t.co/tDr3Eg2J3O |
| Dee Sparacio @womenofteal @AleneGoneBad Glad to have you back . #gyncsm |
| Christina Lizaso @btrfly12 @AleneGoneBad great to see you again and congrats on the fruits of your writing labor :) #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm #gyncsm is not a forum for medical advice. Resources and referrals are provided solely for information and convenience. |
 | Rie Lopez, MPH (she/her) @RieOfLetters Hello Christina, Dee, and everyone else joining. I'm going be a bit quiet tonight, but I am here with you!! #gyncsm |
| Dee Sparacio @womenofteal #gyncsm community is here 2 support and inform survivors, med workers & loved ones w/ gyn cancer interest #gyncsm |
| Christina Lizaso @btrfly12 @RieOfLetters Always lovely to tweet up with you. Thanks for all your support of patient communities. #gyncsm |
| Enlightening Results 💡 @GraceCordovano @btrfly12 @gyncsm Hi Christina! Happy to be joining tonight #gyncsm |
| Dee Sparacio @womenofteal @RieOfLetters We're happy to have you follow along. Thanks for RT #gyncsm |
| Dee Sparacio @womenofteal Thank you to all who have tweeted during the past month with the #gyncsm hashtag and RT'd about this chat |
| GYN Cancer | #GYNCSM @gyncsm We also welcome all those “listening in”. You can always tweet us or email us with questions/comments after the chat is over. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm Tonight we will discuss I've Survived - Dealing with Side Effects and Other Losses. #gyncsm |
| Enlightening Results 💡 @GraceCordovano @RieOfLetters Hi Rie! Nice to see you #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: Tonight we will discuss I've Survived - Dealing with Side Effects and Other Losses. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm As moderator, I'll introduce new Topics with T1, T2... Pls include corresponding T# at front of answer -hard to remember but helpful #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm See this link for a listing of all the #gyncsm topic questions that will be coming up: https://t.co/OePWi39F18 |
| Dee Sparacio @womenofteal RT @gyncsm: As moderator, I'll introduce new Topics with T1, T2... Pls include corresponding T# at front of answer -hard to remember but helpful #gyncsm |
| Christina Lizaso @btrfly12 RT @gyncsm: See this link for a listing of all the #gyncsm topic questions that will be coming up: See this link for a listing of all the #gyncsm topic questions that will be coming up: https://t.co/OePWi39F18 |
| Dee Sparacio @womenofteal RT @gyncsm: See this link for a listing of all the #gyncsm topic questions that will be coming up: See this link for a listing of all the #gyncsm topic questions that will be coming up: https://t.co/OePWi39F18 |
| GYN Cancer | #GYNCSM @gyncsm Lovely to see you all for today's chat. Topic 1 (T1:) coming right up... #gyncsm |
| Rie Lopez, MPH (she/her) @RieOfLetters @GraceCordovano Always nice to see you too, Grace! #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T1: When you think of the losses you’ve experienced related to gynecologic cancer, what are the first things that come to mind? #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T1: T1: When you think of the losses you’ve experienced related to gynecologic cancer, what are the first things that come to mind? #gyncsm |
| Dee Sparacio @womenofteal @GraceCordovano @btrfly12 @gyncsm Welcomoe Grace. Glad you are joining us. #gyncsm |
| Enlightening Results 💡 @GraceCordovano @womenofteal @btrfly12 @gyncsm Hi Dee! Happy to be here ❤️ #gyncsm |
| Dee Sparacio @womenofteal When I think of losses I think friends lost to OC, the organs that allowed me to have my children, my ability to recall words quickly. #gyncsm |
| Rie Lopez, MPH (she/her) @RieOfLetters Where I will be for the next hour. 💗 #gyncsm https://t.co/X7DvdeUeQw |
| Rick Boulay,MD @journeycancer RT @gyncsm: T1: T1: When you think of the losses you’ve experienced related to gynecologic cancer, what are the first things that come to mind? #gyncsm |
| Christina Lizaso @btrfly12 @GraceCordovano thanks for the information you share to #patientchat #gyncsm and other tags |
| Dee Sparacio @womenofteal @HPVCervicalCncr remember to add #gyncsm |
| Dee Sparacio @womenofteal #gyncsm https://t.co/UURfdZuhng |
| Rick Boulay,MD @journeycancer RT @womenofteal: When I think of losses I think friends lost to OC, the organs that allowed me to have my children, my ability to recall words quickly. #gyncsm |
| Christina Lizaso @btrfly12 T1: For me, it's the faces of ovarian cancer survivors I have worked with over the years who are no longer here to advocate. #gyncsm |
 | Ann Becker-Schutte @DrBeckerSchutte Sending warm thoughts to #gyncsm community. I am sidelined by a nasty virus right now, so struggling to stay awake. |
 | Nancy's Point @NancysPoint Stopping by to say, hi. Such an important topic impacting breast cancer patients like myself too. TY for discussing it tonight. #gyncsm |
| Dee Sparacio @womenofteal @AleneGoneBad Yes , the no care in the world becomes will I recur at every appointment #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: T1: T1: For me, it's the faces of ovarian cancer survivors I have worked with over the years who are no longer here to advocate. #gyncsm |
| Christina Lizaso @btrfly12 @DrBeckerSchutte sending healing thoughts your way - thanks for checking in - rest up :) #gyncsm |
| Dee Sparacio @womenofteal @DrBeckerSchutte Oh no ... Feel better. #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @gyncsm: See this link for a listing of all the #gyncsm topic questions that will be coming up: See this link for a listing of all the #gyncsm topic questions that will be coming up: https://t.co/OePWi39F18 |
| Ann Becker-Schutte @DrBeckerSchutte RT @womenofteal: When I think of losses I think friends lost to OC, the organs that allowed me to have my children, my ability to recall words quickly. #gyncsm |
| Christina Lizaso @btrfly12 @NancysPoint Thanks for all you do Nancy. You often put to words on your blog so well what is rumbling in my mind. #gyncsm |
| Nancy's Point @NancysPoint RT @gyncsm: T1: When you think of losses you’ve experienced related to gynecologic cancer, what are first things that come to mind? #gyncsm |
| Rie Lopez, MPH (she/her) @RieOfLetters T1: This is always tough, but I think about my cousin who passed earlier this year. I wear teal for her. #gyncsm |
| Christina Lizaso @btrfly12 @AleneGoneBad We welcome all perspectives. Thanks. #gyncsm |
| Dee Sparacio @womenofteal @NancysPoint Your postabout the holidays - sorrow /joy /loss https://t.co/Qzcsj6Bltk fit with this discussion #gyncsm |
| Erica Bednar @EMBOSU A1: many families whom I've worked w/ have lost family members to gyn & other cancers...& many women who I've met w/ have died as their cancer progressed...hoping that the small service I provide (genetics) can prevent future generations from having similar experiences #gyncsm https://t.co/ffM4R6Z4Ly |
| Rick Boulay,MD @journeycancer I think of all the amazing women that I worked with over the years and too many funerals I’ve attended.They are still with me. #gyncsm https://t.co/TGzprSZOja |
| Nancy's Point @NancysPoint @btrfly12 Thanks so much. You're very kind. #gyncsm |
| Rick Boulay,MD @journeycancer RT @womenofteal: #gyncsm https://t.co/UURfdZuhng |
 | VOTE HIM AWAY! OR AT LEAST VOTE! @KymLucas1 The loss of my friend. https://t.co/eB5OzTDRCp |
| Dee Sparacio @womenofteal @AleneGoneBad You have a true understanding of what we patients/survivors go through. Thank you #gyncsm |
| Rie Lopez, MPH (she/her) @RieOfLetters @DrBeckerSchutte May you have a speedy recovery! #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte T1: I hear so much from my clients about the loss of an innocent expectation@of continued health. #GynCSM |
| Enlightening Results 💡 @GraceCordovano T1: Im always thinking of the family & friends who have lost someone and grieve that void, especially around this time of year. #gyncsm |
| Dee Sparacio @womenofteal RT @EMBOSU: A1: A1: many families whom I've worked w/ have lost family members to gyn & other cancers...& many women who I've met w/ have died as their cancer progressed...hoping that the small service I provide (genetics) can prevent future generations from having similar experiences #gyncsm https://t.co/ffM4R6Z4Ly |
| GYN Cancer | #GYNCSM @gyncsm RT @journeycancer: I think of all the amazing women that I worked with over the years and too many funerals I’ve attended.They are still with me. #gyncsm https://t.co/TGzprSZOja |
| Ann Becker-Schutte @DrBeckerSchutte RT @journeycancer: I think of all the amazing women that I worked with over the years and too many funerals I’ve attended.They are still with me. #gyncsm https://t.co/TGzprSZOja |
| GYN Cancer | #GYNCSM @gyncsm T2: What physical losses have you experienced? Have you talked to your provider about them? Pls share any tips that have helped you. #gyncsm |
| Dee Sparacio @womenofteal @EMBOSU Knowing that information is important to the women and their families. #gyncsm |
| Enlightening Results 💡 @GraceCordovano @btrfly12 @DrBeckerSchutte Oh no! Feel better soon #gyncsm |
| Dee Sparacio @womenofteal RT @DrBeckerSchutte: T1: T1: I hear so much from my clients about the loss of an innocent expectation@of continued health. #GynCSM |
| Dee Sparacio @womenofteal RT @journeycancer: I think of all the amazing women that I worked with over the years and too many funerals I’ve attended.They are still with me. #gyncsm https://t.co/TGzprSZOja |
| Rick Boulay,MD @journeycancer RT @gyncsm: T2: T2: What physical losses have you experienced? Have you talked to your provider about them? Pls share any tips that have helped you. #gyncsm |
| Dee Sparacio @womenofteal RT @GraceCordovano: T1: T1: Im always thinking of the family & friends who have lost someone and grieve that void, especially around this time of year. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T2: T2: What physical losses have you experienced? Have you talked to your provider about them? Pls share any tips that have helped you. #gyncsm |
 | Jenny Mueller MD @JennyMueller_ Am a gyn oncologist and reading and learning from this great forum tonight. #gyncsm |
| Christina Lizaso @btrfly12 T2: I hear from survivors about missing their "pep" and also missing how they used to be able to multitask. I guess those cross both mental and physical #gyncsm |
| Dee Sparacio @womenofteal T2 Feeling the toes in my left foot, My thick hair ( after losing it twice it is thin) , #gyncsm |
| Christina Lizaso @btrfly12 @JennyMueller_ Welcome. Thanks for being here. #gyncsm |
| Rie Lopez, MPH (she/her) @RieOfLetters @GraceCordovano Yes! This time of year is so very difficult for so many. It's important to acknowledge that holidays don't always bring joy. #gyncsm |
| Dee Sparacio @womenofteal @JennyMueller_ Welcome Jenny . Thanks for Joining us #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: T2: T2: I hear from survivors about missing their "pep" and also missing how they used to be able to multitask. I guess those cross both mental and physical #gyncsm |
| Nancy's Point @NancysPoint Cancer is a string of losses - of many kinds, so of course, there is lots of grieving as well. How could there not be? #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm @cawincolumbia Thanks for sharing. Include #gyncsm if you want those who you are connected with who are on the chat to see your tweets in the feed. :) |
| Rick Boulay,MD @journeycancer RT @NancysPoint: Cancer is a string of losses - of many kinds, so of course, there is lots of grieving as well. How could there not be? #gyncsm |
| Christina Lizaso @btrfly12 RT @NancysPoint: Cancer is a string of losses - of many kinds, so of course, there is lots of grieving as well. How could there not be? #gyncsm |
| Christina Lizaso @btrfly12 Cancer takes so much. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm Grateful to all for sharing. Topic 3 (T3:) coming up... #gyncsm |
| Enlightening Results 💡 @GraceCordovano @HPVCervicalCncr There are no words. I’m simply here ❤️ #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm [ Moderator Note - If you are using a twitter tool vs. twitter you might be missing out on some of the tweets ] #gyncsm |
| Dr. Heidi Donovan @HeidiSDonovan And it seems that physical losses tend to change how we see ourselves socially, emotionally... #gyncsm |
| Dee Sparacio @womenofteal @HPVCervicalCncr Cancer takes so much - so much that others are not aware of. #gyncsm |
| Dee Sparacio @womenofteal This is so true. https://t.co/M5OP6DUrXV |
| Enlightening Results 💡 @GraceCordovano RT @womenofteal: @HPVCervicalCncr Cancer takes so much - so much that others are not aware of. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T3: Has the death of women w/ similar diagnosis affected you? What tactics do you put into place to deal w/ loss of friends, family? #gyncsm |
| Christina Lizaso @btrfly12 RT @HeidiSDonovan: And it seems that physical losses tend to change how we see ourselves socially, emotionally... #gyncsm |
 | Jess Wedel @Jess_Wedel T2: feeling in my fingers, lots of organs, my fertility, endurance, a sharp brain. #gyncsm https://t.co/DZOjsbAm77 |
| Dee Sparacio @womenofteal T2 for physical loss I've heard I about Cancer rehabilitation @cancerDotNet https://t.co/P1s9RmD7em Wonder why more places don't share this info #gyncsm |
| Dee Sparacio @womenofteal @Jess_Wedel I can totally relate. #gyncsm |
| Rick Boulay,MD @journeycancer I thank everyone for sharing this powerful information. As a Doc most people try to please me. The stories of loss rarely happen. #gyncsm |
| Christina Lizaso @btrfly12 Cancer takes yet some around cancer survivors seem to think "they should be over it by now". #gyncsm |
| Rie Lopez, MPH (she/her) @RieOfLetters T2: Speaking solely from my observations and talks with others, it is okay and important to grieve the things that you feel you've lost. Don't feel like you have to hide it/be positive all the time. #gyncsm |
| Rick Boulay,MD @journeycancer RT @gyncsm: T3: T3: Has the death of women w/ similar diagnosis affected you? What tactics do you put into place to deal w/ loss of friends, family? #gyncsm |
| Nancy's Point @NancysPoint TY. So much loss. RT @womenofteal Your post about the holidays - sorrow /joy /loss https://t.co/fC5Jl15mzN fits with this discussion #gyncsm |
| Christina Lizaso @btrfly12 Making oneself vulnerable is hard but can lead to strength. I thank everyone for sharing their truths about loss tonight. #gyncsm |
| Dee Sparacio @womenofteal @journeycancer Sometimes it is hard to share when we feel these losses because after all we are alive. #gyncsm |
| Erica Bednar @EMBOSU Agreed...thank you all for being so brave and open to sharing your stories ❤ #gyncsm https://t.co/HQDohlQfv0 |
| Dee Sparacio @womenofteal You are right! https://t.co/JpUMlJtjnc |
| Rick Boulay,MD @journeycancer RT @RieOfLetters: T2: T2: Speaking solely from my observations and talks with others, it is okay and important to grieve the things that you feel you've lost. Don't feel like you have to hide it/be positive all the time. #gyncsm |
| Christina Lizaso @btrfly12 T3: When you participate in disease communities, loss comes with it... And it is okay to step away from time to time and recharge #gyncsm |
| Enlightening Results 💡 @GraceCordovano @womenofteal @CancerDotNet Had a great interaction with @CancerDotNet earlier today. Great resources. Agree, needs to be more widely discussed. #gyncsm |
| Enlightening Results 💡 @GraceCordovano RT @womenofteal: T2 for physical loss I've heard I about Cancer rehabilitation @cancerDotNet https://t.co/P1s9RmD7em Wonder why more places don't share this info #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T3: T3: Has the death of women w/ similar diagnosis affected you? What tactics do you put into place to deal w/ loss of friends, family? #gyncsm |
| Jenny Mueller MD @JennyMueller_ T2 with powerful truths. Thank you for sharing. #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: T3: T3: When you participate in disease communities, loss comes with it... And it is okay to step away from time to time and recharge #gyncsm |
| Christina Lizaso @btrfly12 RT @womenofteal: T2 for physical loss I've heard I about Cancer rehabilitation @cancerDotNet https://t.co/P1s9RmD7em Wonder why more places don't share this info #gyncsm |
| Rie Lopez, MPH (she/her) @RieOfLetters @btrfly12 I wonder, sometimes, if that is driven more by their own feelings of discomfort and fears. I'd worry, of course, about mental health, but I don't think anyone should "be over it" on a set time frame. #gyncsm |
| Jess Wedel @Jess_Wedel This is a good reminder. #gyncsm https://t.co/B8wpTgUleG |
| Dee Sparacio @womenofteal T3 A year after my recurrence I lost 4 friends from my support group. I was devastated, guilty, and scared of recurrence. Speaking to the Social worker helped. She gave coping skills. #gyncsm |
| Rick Boulay,MD @journeycancer RT @womenofteal: @journeycancer Sometimes it is hard to share when we feel these losses because after all we are alive. #gyncsm |
| Dee Sparacio @womenofteal We will have to work on that. #gyncsm https://t.co/jS9Kp1jfHA |
| Erica Bednar @EMBOSU #endcancer https://t.co/Cb8g6gy9Iv |
| Christina Lizaso @btrfly12 @HPVCervicalCncr Sexuality and fertility are so important to discuss before treatment yet those are things often left out. #gyncsm |
| Enlightening Results 💡 @GraceCordovano @HPVCervicalCncr It’s unfortunate when the diagnosis is the main focus and not the whole person. Terrible that ice skating was questioned. Should have been applauded. #gyncsm |
| Dee Sparacio @womenofteal RT @RieOfLetters: @btrfly12 I wonder, sometimes, if that is driven more by their own feelings of discomfort and fears. I'd worry, of course, about mental health, but I don't think anyone should "be over it" on a set time frame. #gyncsm |
| Christina Lizaso @btrfly12 RT @womenofteal: We will have to work on that. #gyncsm https://t.co/jS9Kp1jfHA |
 | Brandi Preston @_brandiii @gyncsm T1: 2nd thought is w/o those cancers many ppl in my family wouldn't have qualified for #brca testing & it may have taken longer to identify the mutation in our family. Criteria must be more comprehensive or better yet hereditary cancer testing moved to population based #gyncsm |
| Christina Lizaso @btrfly12 RT @Jess_Wedel: This is a good reminder. #gyncsm https://t.co/B8wpTgUleG |
 | Geska Lima @Geskalima RT @womenofteal: T2 for physical loss I've heard I about Cancer rehabilitation @cancerDotNet https://t.co/P1s9RmD7em Wonder why more places don't share this info #gyncsm |
| Nancy's Point @NancysPoint T3: Yes. Very much impacted by losses in community. Our hearts break again & again. Yet stepping away for too long isn't an option. #gyncsm |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @btrfly12: T3: T3: When you participate in disease communities, loss comes with it... And it is okay to step away from time to time and recharge #gyncsm |
| Dee Sparacio @womenofteal RT @_brandiii: @gyncsm T1: @gyncsm T1: 2nd thought is w/o those cancers many ppl in my family wouldn't have qualified for #brca testing & it may have taken longer to identify the mutation in our family. Criteria must be more comprehensive or better yet hereditary cancer testing moved to population based #gyncsm |
| Dee Sparacio @womenofteal RT @NancysPoint: T3: T3: Yes. Very much impacted by losses in community. Our hearts break again & again. Yet stepping away for too long isn't an option. #gyncsm |
| Rick Boulay,MD @journeycancer Life is to be lived. There are no do overs. #gyncsm https://t.co/G8oCPbGOFc |
| GYN Cancer | #GYNCSM @gyncsm Topic 4 (T4:) coming up... #gyncsm |
| Enlightening Results 💡 @GraceCordovano @AleneGoneBad @womenofteal @CancerDotNet We must focus on treating the whole person. Tumors & diagnoses don’t need rehab. That’s why it’s not a priority. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T4: Women diagnosed w/ gyn cancers have said loss of sexual intimacy has been difficult. What advice do you have for others? #gyncsm |
| Christina Lizaso @btrfly12 RT @_brandiii: @gyncsm T1: @gyncsm T1: 2nd thought is w/o those cancers many ppl in my family wouldn't have qualified for #brca testing & it may have taken longer to identify the mutation in our family. Criteria must be more comprehensive or better yet hereditary cancer testing moved to population based #gyncsm |
| Dee Sparacio @womenofteal Whole patient treatment - I agree. Ask us about our hobbies and livestyle. #gyncsm https://t.co/IqjXB2SBGm |
| Enlightening Results 💡 @GraceCordovano @womenofteal That had to be incredibly difficult & overwhelming on so many levels. I’m glad to hear you got support to help work through it. #gyncsm |
| Rick Boulay,MD @journeycancer RT @gyncsm: T4: T4: Women diagnosed w/ gyn cancers have said loss of sexual intimacy has been difficult. What advice do you have for others? #gyncsm |
 | CAPA @CAPA_Arthritis RT @RieOfLetters: T2: T2: Speaking solely from my observations and talks with others, it is okay and important to grieve the things that you feel you've lost. Don't feel like you have to hide it/be positive all the time. #gyncsm |
| Christina Lizaso @btrfly12 Survivors guilt is very real. And even when you head is being logical, may not change how it feels. #gyncsm |
| Rick Boulay,MD @journeycancer RT @womenofteal: Whole patient treatment - I agree. Ask us about our hobbies and livestyle. #gyncsm https://t.co/IqjXB2SBGm |
| Dee Sparacio @womenofteal @GraceCordovano Thank you. The social worker at my cancer center is wonderful. #gyncsm |
| Rie Lopez, MPH (she/her) @RieOfLetters This is so important to remember! #gyncsm https://t.co/WwwJayeBwI |
| Jess Wedel @Jess_Wedel @gyncsm I wish I had advice. It seems really difficult to come by with my doctors. Almost comical the way it is usually skipped over. #gyncsm |
| Erica Bednar @EMBOSU RT @btrfly12: Survivors guilt is very real. And even when you head is being logical, may not change how it feels. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T4: T4: Women diagnosed w/ gyn cancers have said loss of sexual intimacy has been difficult. What advice do you have for others? #gyncsm |
| Dee Sparacio @womenofteal T4: Women diagnosed w/ gyn cancers have said loss of sexual intimacy has been difficult. What advice do you have for others? #gyncsm |
| Enlightening Results 💡 @GraceCordovano @btrfly12 @HPVCervicalCncr It’s mind-blowing that many doctors avoid talking about fertility & sexual health. We are all adults. There’s no room for stigma, taboos. Patients need answers to pressing questions & reali life concerns. #gyncsm |
| Christina Lizaso @btrfly12 T4 Resource | Renewing Intimacy & Sexuality after Gynecologic Cancer @gyncancer https://t.co/4hugENgmpr #gyncsm |
| Jess Wedel @Jess_Wedel It seems to sneak up on you sometimes. For me, in anxiety that arises when I feel like I’m not doing enough with my life. https://t.co/UZscj8Lgiw |
| Christina Lizaso @btrfly12 T4 Resouce | Women's Guide to Sexuality During & After Cancer Treatment https://t.co/SNBbBh6Hzy #gyncsm |
| Brandi Preston @_brandiii @gyncsm T2: not gyn related but had bilateral mastectomy at 22. Although the benefits greatly outweigh the loss.. Hearing friends w/ babies talk about how important breastfeeding is - is another reminder of something #brca took away (worst loss being my mom when she was 40 to BC) #gyncsm |
| Dee Sparacio @womenofteal #gyncsm https://t.co/JYluDr4yOB |
| Christina Lizaso @btrfly12 T4: Even for the tough things, good to know there are lots of resources out there when you are ready. Being open to talking about it first step... #gyncsm |
| Christina Lizaso @btrfly12 RT @GraceCordovano: @btrfly12 @HPVCervicalCncr It’s mind-blowing that many doctors avoid talking about fertility & sexual health. We are all adults. There’s no room for stigma, taboos. Patients need answers to pressing questions & reali life concerns. #gyncsm |
| Christina Lizaso @btrfly12 RT @Jess_Wedel: It seems to sneak up on you sometimes. For me, in anxiety that arises when I feel like I’m not doing enough with my life. https://t.co/UZscj8Lgiw |
| Jess Wedel @Jess_Wedel RT @btrfly12: T4: T4: Even for the tough things, good to know there are lots of resources out there when you are ready. Being open to talking about it first step... #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm Final topic (T5:) coming up... #gyncsm |
| Rie Lopez, MPH (she/her) @RieOfLetters @Jess_Wedel @gyncsm I'm sorry that your doctors aren't more interested in addressing this aspect of your care. As @GraceCordovano always points out (rightly), we must treat the whole person. #gyncsm |
| Brandi Preston @_brandiii @gyncsm T2: many of my brca+ friends who've had ooph talk about painful intercourse/vaginal dryness and feeling a loss of sexuality. Luckily they've worked with their providers to overcome those hurdles #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm RT @_brandiii: @gyncsm T2: @gyncsm T2: not gyn related but had bilateral mastectomy at 22. Although the benefits greatly outweigh the loss.. Hearing friends w/ babies talk about how important breastfeeding is - is another reminder of something #brca took away (worst loss being my mom when she was 40 to BC) #gyncsm |
| Dee Sparacio @womenofteal T4 Not easy conversations to have . But one day I asked my nurses about lubricants. She gave me a list . I Kept trying them till I find one that worked for me. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm RT @_brandiii: @gyncsm T2: @gyncsm T2: many of my brca+ friends who've had ooph talk about painful intercourse/vaginal dryness and feeling a loss of sexuality. Luckily they've worked with their providers to overcome those hurdles #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T5: What areas of loss (physical, emotional, social or otherwise) do you think need more research? #gyncsm |
| Rick Boulay,MD @journeycancer RT @btrfly12: T4: T4: Even for the tough things, good to know there are lots of resources out there when you are ready. Being open to talking about it first step... #gyncsm |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @btrfly12: T4 Resource | Renewing Intimacy & Sexuality after Gynecologic Cancer @gyncancer https://t.co/4hugENgmpr #gyncsm |
| Enlightening Results 💡 @GraceCordovano @AleneGoneBad @btrfly12 @HPVCervicalCncr Have I got a book for you! You must read #InShock by @RanaAwdish. A call for more empathy and compassion in medicine. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T5: T5: What areas of loss (physical, emotional, social or otherwise) do you think need more research? #gyncsm |
| Rick Boulay,MD @journeycancer RT @gyncsm: T5: T5: What areas of loss (physical, emotional, social or otherwise) do you think need more research? #gyncsm |
| Rick Boulay,MD @journeycancer All of them. #gyncsm https://t.co/szhsvWGJzH |
| Rie Lopez, MPH (she/her) @RieOfLetters @womenofteal This is great Dee! Sometimes, in order to advocate for yourself, you need to have those "not easy" conversations. #gyncsm |
 | Danielle Pardue @Actorielle RT @womenofteal: @HPVCervicalCncr Cancer takes so much - so much that others are not aware of. #gyncsm |
| Danielle Pardue @Actorielle RT @GraceCordovano: T1: T1: Im always thinking of the family & friends who have lost someone and grieve that void, especially around this time of year. #gyncsm |
| Jess Wedel @Jess_Wedel @RieOfLetters @gyncsm @GraceCordovano Yes, thank you. I get why it is hard for doctors. They have a small amount of time to save a lot of lives. I did finally get a referral from his office for another provider that could help. It takes a lot of work on the part of the patient to advocate for what they need. #gyncsm |
 | Kathleen Burke @kgburke3 RT @journeycancer: All of them. #gyncsm https://t.co/szhsvWGJzH |
| Erica Bednar @EMBOSU RT @journeycancer: All of them. #gyncsm https://t.co/szhsvWGJzH |
| Danielle Pardue @Actorielle RT @btrfly12: T3: T3: When you participate in disease communities, loss comes with it... And it is okay to step away from time to time and recharge #gyncsm |
| Enlightening Results 💡 @GraceCordovano @womenofteal I love nurses! Patients should definitely reach out to them, especially if doctors aren’t answering sexual health questions. Many options, lubricants, tools available. #gyncsm |
| Dee Sparacio @womenofteal T4 here is some info from @cancdotnet on managing menopaus and side effects from treatment https://t.co/hHLCcDj0A7 #gyncsm |
| Dr. Heidi Donovan @HeidiSDonovan T5: As we learn more about all of the losses, research has to focus on how we support women to LIVE fully despite the loss. #gyncsm |
| Nancy's Point @NancysPoint Agree. RT @journeycancer: All of them. #gyncsm https://t.co/Fp0fE9tw7q |
| Dee Sparacio @womenofteal @Jess_Wedel @RieOfLetters @gyncsm @GraceCordovano We are constantly advocating for ourselves. #gyncsm |
| Christina Lizaso @btrfly12 T5: The goal is to have more cancer survivors, but we have to plan for how to support them as well. #gyncsm |
| Enlightening Results 💡 @GraceCordovano @journeycancer Also more scientific research to bring therapies from bench to bedside. #gyncsm |
| Dee Sparacio @womenofteal @GraceCordovano Mine are wonderful. We go back 10+ years now. I remember when their children were in elementary school .#gyncsm |
| Rick Boulay,MD @journeycancer Did anyone have access to and see a sexual counselor? How was that experience?We had one but she retired and wasn’t replaced due to low use https://t.co/szhsvWGJzH |
| Dee Sparacio @womenofteal Yes ! https://t.co/8FYcEF0617 |
| Christina Lizaso @btrfly12 T5: I'd also love to see more research surrounding getting ahead of neuropathy. Chemo nurses have tips but nothing universal #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm So incredibly grateful for all who are sharing and listening for tonight's chat on loss. #gyncsm |
| Dee Sparacio @womenofteal Yes . #gyncsm https://t.co/8FYcEF0617 |
| Danielle Pardue @Actorielle RT @btrfly12: T5: T5: The goal is to have more cancer survivors, but we have to plan for how to support them as well. #gyncsm |
| Dr. Heidi Donovan @HeidiSDonovan T5: Recognizing that it takes ongoing conversations, trials and errors, work work. And that HCPs have to start the conversation! #gyncsm |
| Rie Lopez, MPH (she/her) @RieOfLetters @Jess_Wedel @gyncsm @GraceCordovano Yes! Advocating for yourself, especially as a patient, is a lot of work, but you did it. I think that is awesome! #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm It it time to staring sharing closing thoughts. You can start your tweet with “TIL:” standing for Today I Learned... #gyncsm |
| Enlightening Results 💡 @GraceCordovano @HPVCervicalCncr @AleneGoneBad @btrfly12 That is unforgivable. That’s beyond desensitized. More like inhumane. #gyncsm |
 | RanaAwdishMD @RanaAwdish RT @GraceCordovano: @AleneGoneBad @btrfly12 @HPVCervicalCncr Have I got a book for you! You must read #InShock by @RanaAwdish. A call for more empathy and compassion in medicine. #gyncsm |
| Christina Lizaso @btrfly12 Also love to see more research projects utilizing the collective wisdom of patient communities to address issues like loss :) #gyncsm |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @btrfly12: T5: T5: The goal is to have more cancer survivors, but we have to plan for how to support them as well. #gyncsm |
| Jess Wedel @Jess_Wedel YES! 🙌🏼 #GynCSM https://t.co/kXmbw9Rq6x |
| Enlightening Results 💡 @GraceCordovano @womenofteal Makes me smile to hear that. More of that please. #gyncsm |
| Danielle Pardue @Actorielle RT @womenofteal: Yes ! https://t.co/8FYcEF0617 |
| Brandi Preston @_brandiii @gyncsm T3: it's also hard to see women do everything they can for prevention and then be diagnosed with pancreatic or other hard to screen/treat cancers in organs that aren't typically removed preventatively. #gyncsm #SurvivorsGuilt |
| Danielle Pardue @Actorielle RT @btrfly12: T5: T5: I'd also love to see more research surrounding getting ahead of neuropathy. Chemo nurses have tips but nothing universal #gyncsm |
| Dee Sparacio @womenofteal @btrfly12 I just was in a trial for neuropathy and I was so happy to see the research being done. But we need to try to try to stop it before it happens. https://t.co/sctJlwwbZ8 #gyncsm |
| Rie Lopez, MPH (she/her) @RieOfLetters So much of this! #gyncsm https://t.co/rfLhSSJXBz |
| Dr. Heidi Donovan @HeidiSDonovan @btrfly12- YES! grassroots driven research. The wave of the future! #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm #gyncsm : https://t.co/L3ogpHmNa7 |
| Dee Sparacio @womenofteal #gyncsm https://t.co/i53KD4oKAC |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @HeidiSDonovan: T5: T5: As we learn more about all of the losses, research has to focus on how we support women to LIVE fully despite the loss. #gyncsm |
| Dee Sparacio @womenofteal @cawincolumbia Yes this is important for so many patients treated with chemotherapy. #gyncsm |
| Erica Bednar @EMBOSU TIL how far reaching the concept of "loss" extends to those facing a diagnosis or history of cancer. Thankful for everyone who shared their experiences during the chat tonight! #gyncsm #endcancer https://t.co/cnWEkZqnKY |
| Christina Lizaso @btrfly12 @journeycancer hmmm... maybe just such a tough topic people find it hard to take that first step to get help even when offered... wonder what would help this.. #gyncsm |
| Dee Sparacio @womenofteal @HPVCervicalCncr Seems like we need to talk about intimacy early on - makes sense if you are treating the whole patient. #gyncsm |
| Christina Lizaso @btrfly12 RT @womenofteal: @btrfly12 I just was in a trial for neuropathy and I was so happy to see the research being done. But we need to try to try to stop it before it happens. https://t.co/sctJlwwbZ8 #gyncsm |
| Brandi Preston @_brandiii @gyncsm T5: survivors guilt needs more research. I've seen it in patients who have known hereditary cancer mutation in the fam but test negative. Sense of helplessness, disconnection from other members of the family who do carry mutation that can share experiences, etc #gyncsm |
| Rick Boulay,MD @journeycancer TIL The Survivorship is an amazing and resilient group of individuals whose wisdom and passion have changed my life. #gyncsm https://t.co/dHs9pNjH2U |
| GYN Cancer | #GYNCSM @gyncsm Thanks to everyone for the wonderful conversation. Next #gyncsm chat: Wed, Jan 10, 2018 on Gyn Cancer #Caregivers. |
| Enlightening Results 💡 @GraceCordovano @womenofteal @Jess_Wedel @RieOfLetters @gyncsm You all should join the Society for Participatory Medicine @S4PM. #gyncsm |
| Rie Lopez, MPH (she/her) @RieOfLetters TIL: There are so many people who care and are committed to lifting each other up, even when dealing with their own grief and feelings of loss. I am truly inspired by all of you. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm Remember to tweet things of interest with hashtag #gyncsm to keep the conversation going between chats. |
| Dee Sparacio @womenofteal @btrfly12 I would too. So who do we reach out to to do this? Anyone? Maybe across other #_csm communities. #gyncsm |
| Rick Boulay,MD @journeycancer RT @gyncsm: Thanks to everyone for the wonderful conversation. Next #gyncsm chat: Thanks to everyone for the wonderful conversation. Next #gyncsm chat: Wed, Jan 10, 2018 on Gyn Cancer #Caregivers. |
| GYN Cancer | #GYNCSM @gyncsm Amazing, wonderful conversation tonight. Every participant helped make it so. Thank you for spending time with #gyncsm |
| Nancy's Point @NancysPoint Thanks so much for the chat. Good night all. #gyncsm |
 | Jillosopher, BSN, RN @jillosopher Thanks, #gyncsm Tonight I could only lurk. I’m so full of fury and grief I can’t even talk about it. |
| Jess Wedel @Jess_Wedel RT @journeycancer: TIL The Survivorship is an amazing and resilient group of individuals whose wisdom and passion have changed my life. #gyncsm https://t.co/dHs9pNjH2U |
| Christina Lizaso @btrfly12 @jillosopher Glad you listened in. You know we are here. Sending love and light. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm Patients and caregivers are invited to continue our discussion on the Smart Patients platform at https://t.co/dFCf1Mcahw #gyncsm |
| Dee Sparacio @womenofteal #gyncsm https://t.co/hYdWJSrOMU |
| GYN Cancer | #GYNCSM @gyncsm Read more about #gyncsm working w/ @smart_patients to continue our chats in >private setting w/ >140 characters https://t.co/Cfdee4xCga |
| Rick Boulay,MD @journeycancer Thanks everyone for all you’ve shared tonight. It’s powerful stuff. #gyncsm |
| Dee Sparacio @womenofteal @GraceCordovano @Jess_Wedel @RieOfLetters @gyncsm @S4PM I'm a member. #gyncsm Lots of good work going on. |
| Dee Sparacio @womenofteal RT @gyncsm: Remember to tweet things of interest with hashtag #gyncsm to keep the conversation going between chats. |
| Jess Wedel @Jess_Wedel @gyncsm Thank you for making it happen. It’s always nice to connect with others that understand. 😊 #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm #gyncsm is your community. Thanks to all who listen, learn and share. |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @womenofteal: #gyncsm https://t.co/hYdWJSrOMU |
| GYN Cancer | #GYNCSM @gyncsm RT @EMBOSU: TIL how far reaching the concept of "loss" extends to those facing a diagnosis or history of cancer. Thankful for everyone who shared their experiences during the chat tonight! #gyncsm #endcancer https://t.co/cnWEkZqnKY |
| Rick Boulay,MD @journeycancer Good night everyone. Happy Hanukkah and Merry Christmas #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm RT @_brandiii: @gyncsm T5: @gyncsm T5: survivors guilt needs more research. I've seen it in patients who have known hereditary cancer mutation in the fam but test negative. Sense of helplessness, disconnection from other members of the family who do carry mutation that can share experiences, etc #gyncsm |
| Enlightening Results 💡 @GraceCordovano @womenofteal @Jess_Wedel @RieOfLetters @gyncsm @S4PM I should have known!! #gyncsm https://t.co/32tdxRSbQa |
| GYN Cancer | #GYNCSM @gyncsm RT @journeycancer: TIL The Survivorship is an amazing and resilient group of individuals whose wisdom and passion have changed my life. #gyncsm https://t.co/dHs9pNjH2U |
| Dee Sparacio @womenofteal Remember to check https://t.co/Df2f7Okp35 for a transcript of the chat and resources #gyncsm |
| Dee Sparacio @womenofteal We wish everyone a very Happy Holiday! #gyncsm https://t.co/lENvNB0q3K |
| Rie Lopez, MPH (she/her) @RieOfLetters @GraceCordovano @womenofteal @Jess_Wedel @gyncsm @S4PM I knew that there was something I wanted to do... Thanks for the reminder Grace! #gyncsm |
| Dee Sparacio @womenofteal TIL that it is OK to talk about all types of losses that come with being a cancer patient/survivor Because so many have felt the same way. #gyncsm |
| Brandi Preston @_brandiii I think this may be another reason to ID high risk patients at young age/begin to see gyn onc young so they can build comfortable relationship over time and if/when needed, those conversations are not as awkward #gyncsm https://t.co/YZK0Zck6Zn |
| Brandi Preston @_brandiii RT @HeidiSDonovan: T5: T5: As we learn more about all of the losses, research has to focus on how we support women to LIVE fully despite the loss. #gyncsm |
 | Dr. Karen Wickersham @wickster55 RT @HeidiSDonovan: T5: T5: As we learn more about all of the losses, research has to focus on how we support women to LIVE fully despite the loss. #gyncsm |
| Christina Lizaso @btrfly12 May this season bring you all peace, love and joy. :) #gyncsm |
| Christina Lizaso @btrfly12 @HPVCervicalCncr yay :) 2nd Wednesdays 9pmET #gyncsm |
| Christina Lizaso @btrfly12 RT @womenofteal: We wish everyone a very Happy Holiday! #gyncsm https://t.co/lENvNB0q3K |
| Dee Sparacio @womenofteal And to @btrfly12 Thanks for everything you do for #gyncsm. You are amazing. One day we will meet in person. Peace, Joy and Love to you and your family. |
| Christina Lizaso @btrfly12 @journeycancer Thanks for all you do. #gyncsm |
| Dee Sparacio @womenofteal @HPVCervicalCncr Good night and thanks for joining us! #gyncsm |
| Dee Sparacio @womenofteal #gyncsm https://t.co/MDtgsKhbGT |
| Christina Lizaso @btrfly12 RT @_brandiii: I think this may be another reason to ID high risk patients at young age/begin to see gyn onc young so they can build comfortable relationship over time and if/when needed, those conversations are not as awkward #gyncsm https://t.co/YZK0Zck6Zn |
| Christina Lizaso @btrfly12 RT @womenofteal: TIL that it is OK to talk about all types of losses that come with being a cancer patient/survivor Because so many have felt the same way. #gyncsm |
| Christina Lizaso @btrfly12 RT @RieOfLetters: TIL: TIL: There are so many people who care and are committed to lifting each other up, even when dealing with their own grief and feelings of loss. I am truly inspired by all of you. #gyncsm |
| Christina Lizaso @btrfly12 RT @gyncsm: Thanks to everyone for the wonderful conversation. Next #gyncsm chat: Thanks to everyone for the wonderful conversation. Next #gyncsm chat: Wed, Jan 10, 2018 on Gyn Cancer #Caregivers. |
| Rie Lopez, MPH (she/her) @RieOfLetters @btrfly12 Wishing you the same, Christina! 😊 #gyncsm |
| Dee Sparacio @womenofteal RT @GraceCordovano: @womenofteal @Jess_Wedel @RieOfLetters @gyncsm You all should join the Society for Participatory Medicine @S4PM. #gyncsm |
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