#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. | |
GYN Cancer | #GYNCSM @gyncsm Our co-moderators are @womenofteal @btrfly12 Our health care moderators are @ShannonWestin @temkins @journeycancer and our mental health moderator @DrBeckerSchutte We start out with brief intro’s - Please take a moment to introduce yourself. #gyncsm | |
Dee Sparacio @womenofteal RT @gyncsm: Our co-moderators are @womenofteal @btrfly12 Our health care moderators are @ShannonWestin @temkins @journeycancer and our mental health moderator @DrBeckerSchutte We start out with brief intro’s - Please take a moment to introduce yourself. #gyncsm | |
Christina Lizaso @btrfly12 RT @gyncsm: Welcome to #gyncsm - a passionate community for gynecologic cancer survivors, caregivers, advocates and health care providers. | |
Christina Lizaso @btrfly12 Christina Lizaso – passionate re: community engagement and cancer care. I’ll be moderating as @gyncsm today. #gyncsm | |
EcanaAdrienne @AdrienneEcana #gyncsm Hi, I am Adrienne. Stage III ec survivor | |
Dee Sparacio @womenofteal Dee here! Dx with #ovca Stage3B 2005, recurrence 2008, Ovarian Cancer research advocate, blogger, co-Author of “100 Questions and Answers about Ovarian cancer” & co-moderator #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: 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! | |
GYN Cancer | #GYNCSM @gyncsm The #gyncsm chat promotes community in a public forum. Chats are an open discussion and all are welcome to share from their experiences and perspectives. Learn more about risks/benefits: https://t.co/TipZUv1RG6 | |
Dee Sparacio @womenofteal RT @gyncsm: The #gyncsm chat promotes community in a public forum. Chats are an open discussion and all are welcome to share from their experiences and perspectives. Learn more about risks/benefits: https://t.co/TipZUv1RG6 | |
GYN Cancer | #GYNCSM @gyncsm #gyncsm is not a forum for individual medical advice. Resources and referrals and provided solely for information and convenience. | |
Dee Sparacio @womenofteal #gyncsm tagged resources and referrals are not a substitute for speaking with your doctor who understands your needs and history. | |
GYN Cancer | #GYNCSM @gyncsm Are you new to tweet chats? Follow hashtag #gyncsm under Explore - Latest and include the hashtag in every tweet during the next hour to engage with others about this topic. You may need to refresh to see new tweets as they are added. | |
Dee Sparacio @womenofteal RT @gyncsm: Are you new to tweet chats? Follow hashtag #gyncsm under Explore - Latest and include the hashtag in every tweet during the next hour to engage with others about this topic. You may need to refresh to see new tweets as they are added. | |
GYN Cancer | #GYNCSM @gyncsm We welcome all those joining in as well as those here to “listen in”. We'd love you to tweet #gyncsm so we know you are here and you can always tweet, DM or email us with questions/comments after the chat is over if you like. See our blog for info: https://t.co/nDbbZnerzF | |
EcanaAdrienne @AdrienneEcana RT @gyncsm: Are you new to tweet chats? Follow hashtag #gyncsm under Explore - Latest and include the hashtag in every tweet during the next hour to engage with others about this topic. You may need to refresh to see new tweets as they are added. | |
Christina Lizaso @btrfly12 RT @gyncsm: Are you new to tweet chats? Follow hashtag #gyncsm under Explore - Latest and include the hashtag in every tweet during the next hour to engage with others about this topic. You may need to refresh to see new tweets as they are added. | |
Dee Sparacio @womenofteal RT @gyncsm: We welcome all those joining in as well as those here to “listen in”. We'd love you to tweet #gyncsm so we know you are here and you can always tweet, DM or email us with questions/comments after the chat is over if you like. See our blog for info: https://t.co/nDbbZnerzF | |
GYN Cancer | #GYNCSM @gyncsm Tonight on #gyncsm we’ll be discussing Recurrence - reducing your risk and treatment decisions. You can find the 7 Topic Questions we’ll cover on today’s chat over on our #gyncsm blog: https://t.co/ui9HlMGzTG | |
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. We will also end our chat with a chance to share TIL: thoughts standing for “Today I Learned”. #gyncsm | |
Dee Sparacio @womenofteal Remember - Twitter is an open social network and posts are public. Use a Direct Message to exchange email addresses/personal information.#gyncsm | |
Christina Lizaso @btrfly12 RT @gyncsm: Tonight on #gyncsm we’ll be discussing Recurrence - reducing your risk and treatment decisions. You can find the 7 Topic Questions we’ll cover on today’s chat over on our #gyncsm blog: https://t.co/ui9HlMGzTG | |
Rita Musanti, PhD, APN-BC, AOCNP @R_Musanti RT @womenofteal: Dee here! Dx with #ovca Stage3B 2005, recurrence 2008, Ovarian Cancer research advocate, blogger, co-Author of “100 Questions and Answers about Ovarian cancer” & co-moderator #gyncsm | |
Dee Sparacio @womenofteal RT @gyncsm: We’ll use a Topic format with T1:; T2: etc. Please include the corresponding T#: We’ll use a Topic format with T1:; T2: etc. Please include the corresponding T#: at the front of your comment or answer. We will also end our chat with a chance to share TIL: thoughts standing for “Today I Learned”. #gyncsm | |
Dee Sparacio @womenofteal Thank you to all who have tweeted valuable information to our community during the past month using the #gyncsm hashtag and those who helped promote tonight's chat. | |
GYN Cancer | #GYNCSM @gyncsm With most cancers there is some risk of recurrence. Meaning that the original type of cancer comes back. Here comes Topic 1 (T1:)... #gyncsm | |
Dee Sparacio @womenofteal Ovarian Cancer advocates - Two opportunities @NRGonc looking for candidates for the Oncology Patient Advocate Committee https://t.co/hohkodFa4o 1 /2 #gyncsm | |
Dee Sparacio @womenofteal 2/2 @PowerOvarian Looking for ovarian cancer advocate (patient, survivor, family member, caregiver, previvor, or person touched by ovarian cancer) to attend the @AACR Annual Meeting, April 14-19, 2023, in Orlando Deadline 12/31 https://t.co/fRWyjGpraF 2/2 #gyncsm | |
GYN Cancer | #GYNCSM @gyncsm T1: Was risk of recurrence something you spoke about with your healthcare team? What should doctors be sharing with patients about recurrence? #gyncsm | |
Dee Sparacio @womenofteal RT @gyncsm: T1: T1: Was risk of recurrence something you spoke about with your healthcare team? What should doctors be sharing with patients about recurrence? #gyncsm | |
Christina Lizaso @btrfly12 RT @womenofteal: Ovarian Cancer advocates - Two opportunities @NRGonc looking for candidates for the Oncology Patient Advocate Committee https://t.co/hohkodFa4o 1 /2 #gyncsm | |
Christina Lizaso @btrfly12 RT @womenofteal: 2/2 @PowerOvarian Looking for ovarian cancer advocate (patient, survivor, family member, caregiver, previvor, or person touched by ovarian cancer) to attend the @AACR Annual Meeting, April 14-19, 2023, in Orlando Deadline 12/31 https://t.co/fRWyjGpraF 2/2 #gyncsm | |
Christina Lizaso @btrfly12 RT @gyncsm: T1: T1: Was risk of recurrence something you spoke about with your healthcare team? What should doctors be sharing with patients about recurrence? #gyncsm | |
Christina Lizaso @btrfly12 T1: Recurrence can be a super uncomfortable topic, but I just remember hearing from far too many ovarian cancer patients that they were completely blind-sided when they recurred - and then learned about the >85% recurrence rate. :/ #gyncsm | |
Dee Sparacio @womenofteal @gyncsm T1 I was aware of the stats for stage 3 and was not totally surprised ( still thought I would avoid it) when I recurred 2 1/2 years after finishing chemo. #gyncsm | |
Martina Murphy, MD @DrMMurphy @gyncsm @womenofteal @btrfly12 @ShannonWestin @temkins @journeycancer @DrBeckerSchutte Martina Murphy - medical gyn onc from @UFHealthCancer. Here to listen & learn from all of you. #gyncsm | |
Christina Lizaso @btrfly12 T1: I wonder if there have been any cancer communication studies about when to talk about recurrence risk and strategies for that conversation. Has to be some reality mixed in with hope I think. #gyncsm | |
Dee Sparacio @womenofteal RT @btrfly12: T1: T1: Recurrence can be a super uncomfortable topic, but I just remember hearing from far too many ovarian cancer patients that they were completely blind-sided when they recurred - and then learned about the >85% recurrence rate. :/ #gyncsm | |
EcanaAdrienne @AdrienneEcana #gyncsm T:1. No this was not a discussion my provider had with me. It was only after I finished treatment that I was knowledgeable enough to find that information and available resources for myself | |
Dee Sparacio @womenofteal @DrMMurphy @gyncsm @btrfly12 @ShannonWestin @temkins @journeycancer @DrBeckerSchutte @UFHealthCancer Hi Dr Murphy Welcome! Thanks for joining us #gyncsm | |
Christina Lizaso @btrfly12 @DrMMurphy @gyncsm @womenofteal @ShannonWestin @temkins @journeycancer @DrBeckerSchutte @UFHealthCancer Thanks for joining along with #gyncsm. When do you tend to bring up recurrence risk? | |
Dee Sparacio @womenofteal Great question. #gyncsm | |
Dee Sparacio @womenofteal RT @AdrienneEcana: #gyncsm T:1. No this was not a discussion my provider had with me. It was only after I finished treatment that I was knowledgeable enough to find that information and available resources for myself | |
Tambre Leighn, MA, CPC she/her @tambreleighn RT @gyncsm: Tonight on #gyncsm we’ll be discussing Recurrence - reducing your risk and treatment decisions. You can find the 7 Topic Questions we’ll cover on today’s chat over on our #gyncsm blog: https://t.co/ui9HlMGzTG | |
GYN Cancer | #GYNCSM @gyncsm T2: #gyncsm How likely is a recurrence with each of the main GYN cancer types? Has overall risk changed in recent years with the availability of maintenance therapy options or other advances? | |
Dee Sparacio @womenofteal RT @gyncsm: T2: T2: #gyncsm How likely is a recurrence with each of the main GYN cancer types? Has overall risk changed in recent years with the availability of maintenance therapy options or other advances? | |
EcanaAdrienne @AdrienneEcana RT @gyncsm: T2: T2: #gyncsm How likely is a recurrence with each of the main GYN cancer types? Has overall risk changed in recent years with the availability of maintenance therapy options or other advances? | |
GYN Cancer | #GYNCSM @gyncsm #gyncsm MT @StRogista: Yes I did. I did brachytherapy for stage1Bgrade1 uterine cancer to lower my chances of recurrence. Gyno onc & care team should talk to patients about their chances of recurrence, the most likely location of recurrence, & symptoms of recurrence to look out 4 | |
Dee Sparacio @womenofteal RT @gyncsm: #gyncsm MT @StRogista: Yes I did. I did brachytherapy for stage1Bgrade1 uterine cancer to lower my chances of recurrence. Gyno onc & care team should talk to patients about their chances of recurrence, the most likely location of recurrence, & symptoms of recurrence to look out 4 | |
Martina Murphy, MD @DrMMurphy @btrfly12 @gyncsm @womenofteal @ShannonWestin @temkins @journeycancer @DrBeckerSchutte @UFHealthCancer I tend to let patients guide my timing - sometimes I’ll get asked at the time of diagnosis or during active treatment. Most often, this seems to come up as surveillance starts. Your point about the importance that pts not be blindsighted is so true. #gyncsm | |
EcanaAdrienne @AdrienneEcana RT @gyncsm: #gyncsm MT @StRogista: Yes I did. I did brachytherapy for stage1Bgrade1 uterine cancer to lower my chances of recurrence. Gyno onc & care team should talk to patients about their chances of recurrence, the most likely location of recurrence, & symptoms of recurrence to look out 4 | |
GYN Cancer | #GYNCSM @gyncsm Welcome to all joining along for #gyncsm. Be sure to add the hashtag #gyncsm to your replies and/or tweets so everyone can see the conversation :) | |
Dee Sparacio @womenofteal RT @DrMMurphy: @btrfly12 @gyncsm @womenofteal @ShannonWestin @temkins @journeycancer @DrBeckerSchutte @UFHealthCancer I tend to let patients guide my timing - sometimes I’ll get asked at the time of diagnosis or during active treatment. Most often, this seems to come up as surveillance starts. Your point about the importance that pts not be blindsighted is so true. #gyncsm | |
Dee Sparacio @womenofteal RT @gyncsm: Welcome to all joining along for #gyncsm. Be sure to add the hashtag #gyncsm to your replies and/or tweets so everyone can see the conversation :) | |
Martina Murphy, MD @DrMMurphy @womenofteal Fabulous question worth exploring further. #gyncsm | |
Dee Sparacio @womenofteal T2 @ocrahope shared this on their website for recurrence of #ovca #gyncsm https://t.co/3MXFpzxa5f | |
EcanaAdrienne @AdrienneEcana @DrMMurphy @btrfly12 @gyncsm @womenofteal @ShannonWestin @temkins @journeycancer @DrBeckerSchutte @UFHealthCancer #gyncsm I remember asking this because I was unknowlegeable all the likely places recurrence could happen | |
Christina Lizaso @btrfly12 T2: Ovarian cancer has one of the highest recurrence rates of the gyn cancers. Over 85% - but that of course depends on staging, etc. for each individual person. @ocrahope has a breakdown on their page https://t.co/uIwmFMyLLz #gyncsm | |
cathygee @cathygee @gyncsm T1 it was definitely understood esp at dx stage 3 but still not happy when it left and came back (and went away and came back, over and over like an unpleasant relative) #gyncsm | |
Martina Murphy, MD @DrMMurphy Excellent question worth exploring. #OncTwitter - what is your approach to discussions around #cancer recurrence risk? | |
Dee Sparacio @womenofteal T1 This study is about communication after recurrence not during/after initial diagnosis #gyncsm Patients' perceptions of communication with the health care team during chemotherapy for the first recurrence of ovarian cancer https://t.co/a1qx4a1BEn | |
Christina Lizaso @btrfly12 T2: Cervical cancer recurrence risk can range from 11-64%. Staging matters of course. Not sure about for uterine cancer. #gyncsm | |
Sarah Temkin @temkins RT @gyncsm: Our co-moderators are @womenofteal @btrfly12 Our health care moderators are @ShannonWestin @temkins @journeycancer and our mental health moderator @DrBeckerSchutte We start out with brief intro’s - Please take a moment to introduce yourself. #gyncsm | |
Sarah Temkin @temkins RT @womenofteal: T1 This study is about communication after recurrence not during/after initial diagnosis #gyncsm Patients' perceptions of communication with the health care team during chemotherapy for the first recurrence of ovarian cancer https://t.co/a1qx4a1BEn | |
Christina Lizaso @btrfly12 T1: Vaginal and vulvar cancer being much rarer, statistics are tough and generalization harder. #gyncsm | |
EcanaAdrienne @AdrienneEcana RT @womenofteal: T1 This study is about communication after recurrence not during/after initial diagnosis #gyncsm Patients' perceptions of communication with the health care team during chemotherapy for the first recurrence of ovarian cancer https://t.co/a1qx4a1BEn | |
Dee Sparacio @womenofteal RT @btrfly12: T2: T2: Cervical cancer recurrence risk can range from 11-64%. Staging matters of course. Not sure about for uterine cancer. #gyncsm | |
Dee Sparacio @womenofteal RT @btrfly12: T1: T1: Vaginal and vulvar cancer being much rarer, statistics are tough and generalization harder. #gyncsm | |
Martina Murphy, MD @DrMMurphy RT @womenofteal: T1 This study is about communication after recurrence not during/after initial diagnosis #gyncsm Patients' perceptions of communication with the health care team during chemotherapy for the first recurrence of ovarian cancer https://t.co/a1qx4a1BEn | |
GYN Cancer | #GYNCSM @gyncsm T3: #gyncsm Are there things that have been found to reduce the risk of recurrence? What things have you tried or are still doing to reduce your risk? | |
Dee Sparacio @womenofteal RT @gyncsm: T3: T3: #gyncsm Are there things that have been found to reduce the risk of recurrence? What things have you tried or are still doing to reduce your risk? | |
cathygee @cathygee @gyncsm T2 seems inevitable with HGS ovca but with multiple PARP therapies as maintenance (with limited tx duration) we keep pushing the line out for new methods and therapies #gyncsm | |
GYN Cancer | #GYNCSM @gyncsm RT #gyncsm: @otlassie Replying to @gyncsm Lisa. Cervical cancer 6 yr survivor. Adenocarcinoma stage 3 with lymph node involvement. Occupational therapist as a full time side gig. | |
Christina Lizaso @btrfly12 RT @gyncsm: T3: T3: #gyncsm Are there things that have been found to reduce the risk of recurrence? What things have you tried or are still doing to reduce your risk? | |
Dee Sparacio @womenofteal RT @cathygee: @gyncsm T2 seems inevitable with HGS ovca but with multiple PARP therapies as maintenance (with limited tx duration) we keep pushing the line out for new methods and therapies #gyncsm | |
Dee Sparacio @womenofteal @gyncsm @otlassie Welcome Lisa! #gyncsm | |
Sarah Temkin @temkins This is why getting the best initial treatment of cancer is so important. Also why at every stage of the cancer continuum goals of care should be discussed. #gyncsm | |
Dee Sparacio @womenofteal RT @temkins: This is why getting the best initial treatment of cancer is so important. Also why at every stage of the cancer continuum goals of care should be discussed. #gyncsm | |
Christina Lizaso @btrfly12 T3: There have been some long term studies around diet and exercise in ovarian cancer. There are now also maintenance therapies to consider. There is not a whole lot under our control, but there are small things. #gyncsm | |
Christina Lizaso @btrfly12 T3: I have been saying for going on 3-5 years that I need to start working with a nutritionist. It can be hard to add another thing to previvor life. #gyncsm | |
Dee Sparacio @womenofteal @gyncsm T3 I also try to eat healthier and exercise ( yoga , jazzercize,long walks with my dog). Because I felt I was doing something to help myself . #gyncsm | |
Dee Sparacio @womenofteal RT @btrfly12: T3: T3: There have been some long term studies around diet and exercise in ovarian cancer. There are now also maintenance therapies to consider. There is not a whole lot under our control, but there are small things. #gyncsm | |
Martina Murphy, MD @DrMMurphy @btrfly12 I wish we understood more about the diet & exercise piece. Hopefully more work on this in the future. Things that are within our control can really feel empowering. #gyncsm | |
Dee Sparacio @womenofteal RT @btrfly12: T3: T3: I have been saying for going on 3-5 years that I need to start working with a nutritionist. It can be hard to add another thing to previvor life. #gyncsm | |
Dee Sparacio @womenofteal RT @DrMMurphy: @btrfly12 I wish we understood more about the diet & exercise piece. Hopefully more work on this in the future. Things that are within our control can really feel empowering. #gyncsm | |
GYN Cancer | #GYNCSM @gyncsm T4: #gyncsm Fear of recurrence is common. What are some coping mechanisms to reduce the impact of that fear on daily living? What have you found helpful? | |
Merry-Jennifer Markham, MD, FACP, FASCO @DrMarkham @gyncsm Just popping in to say hello! #gyncsm | |
Dee Sparacio @womenofteal #gyncsm | |
Dee Sparacio @womenofteal @DrMarkham @gyncsm Hi Merry. Thanks for stopping by . Stay safe with the hurricane Nicole heading to Florida #gyncsm | |
EcanaAdrienne @AdrienneEcana RT @womenofteal: #gyncsm | |
Christina Lizaso @btrfly12 T4: I think that discussing and making a plan for continued monitoring and talking about what to watch for can help reduce anxiety. Also knowing what will happen - what are the steps - should a recurrence by suspected. #gyncsm | |
Dee Sparacio @womenofteal RT @gyncsm: T4: T4: #gyncsm Fear of recurrence is common. What are some coping mechanisms to reduce the impact of that fear on daily living? What have you found helpful? | |
Christina Lizaso @btrfly12 RT @gyncsm: T4: T4: #gyncsm Fear of recurrence is common. What are some coping mechanisms to reduce the impact of that fear on daily living? What have you found helpful? | |
Matthew Katz, MD 🟦 @subatomicdoc RT @womenofteal: #gyncsm | |
Dee Sparacio @womenofteal RT @btrfly12: T4: T4: I think that discussing and making a plan for continued monitoring and talking about what to watch for can help reduce anxiety. Also knowing what will happen - what are the steps - should a recurrence by suspected. #gyncsm | |
Matthew Katz, MD 🟦 @subatomicdoc Good evening! Matt Katz, radiation oncologist in MA/NH. Joining late, I hope everyone is well #gyncsm | |
Matthew Katz, MD 🟦 @subatomicdoc RT @womenofteal: T1 This study is about communication after recurrence not during/after initial diagnosis #gyncsm Patients' perceptions of communication with the health care team during chemotherapy for the first recurrence of ovarian cancer https://t.co/a1qx4a1BEn | |
Christina Lizaso @btrfly12 T4: Scanxiety is real. Have something that you treat yourself with on a scan day. Give yourself grace in the days surrounding scans. Name that feeling and then be kind to yourself. It is a normal reaction. #gyncsm | |
Matthew Katz, MD 🟦 @subatomicdoc RT @btrfly12: T4: T4: Scanxiety is real. Have something that you treat yourself with on a scan day. Give yourself grace in the days surrounding scans. Name that feeling and then be kind to yourself. It is a normal reaction. #gyncsm | |
Elizabeth Hornsey @StRogista @gyncsm T4: I have found exercise & wildlife/pollinator gardening have helped me deal with fear of recurrence #gyncsm | |
Christina Lizaso @btrfly12 T4: Here's a nice resource from @CancerDotNet Coping With Fear of Recurrence https://t.co/aFzmrUlZhn #gyncsm | |
EcanaAdrienne @AdrienneEcana #gyncsm T4: Unfortunately, I think it is something many of us don't think about or connect with immediately after first round treatment. We are literally still trying to catch our breaths but definitely something we should have a toolkit prepared for. "Break Glass..." mentality | |
Dee Sparacio @womenofteal @gyncsm #gyncsm My social worker told me the best way to deal with the fear was to go to your follow-up appts, call your onc if you felt any symptoms,eat healthy & find something each day to appreciate. I deal with it by staying on top of the latest treatment research - just in case. | |
Dee Sparacio @womenofteal RT @StRogista: @gyncsm T4: @gyncsm T4: I have found exercise & wildlife/pollinator gardening have helped me deal with fear of recurrence #gyncsm | |
Matthew Katz, MD 🟦 @subatomicdoc @btrfly12 Grace is great - but if helpful discuss getting medication for scanxiety from your treatment team #gyncsm | |
Dee Sparacio @womenofteal @subatomicdoc Hi Matt! Thanks for stopping by tonight. Hope you are well. #gyncsm | |
Christina Lizaso @btrfly12 RT @subatomicdoc: @btrfly12 Grace is great - but if helpful discuss getting medication for scanxiety from your treatment team #gyncsm | |
Matthew Katz, MD 🟦 @subatomicdoc RT @gyncsm: T4: T4: #gyncsm Fear of recurrence is common. What are some coping mechanisms to reduce the impact of that fear on daily living? What have you found helpful? | |
Dee Sparacio @womenofteal Very helpful. #gyncsm | |
Matthew Katz, MD 🟦 @subatomicdoc @womenofteal Hi Dee! I'm well thanks, how are you? #gyncsm | |
Dee Sparacio @womenofteal This is so true. #gyncsm | |
Christina Lizaso @btrfly12 @subatomicdoc I definitely take an anti-anxiety pill on MRI day. Highly recommend. It means I need a ride, but human support great too :) #gyncsm | |
EcanaAdrienne @AdrienneEcana #gyncsm T4: My recurrence happened 12 or so years later and by that time the dust had settled and I had to learn how to get back in the trenches again. It can be a process. | |
Dee Sparacio @womenofteal RT @subatomicdoc: @btrfly12 Grace is great - but if helpful discuss getting medication for scanxiety from your treatment team #gyncsm | |
GYN Cancer | #GYNCSM @gyncsm T5: How does treatment for recurrence differ from first-line treatment? What needs to be thought about differently than the first treatment plan? #gyncsm | |
Dee Sparacio @womenofteal RT @AdrienneEcana: #gyncsm T4: #gyncsm T4: My recurrence happened 12 or so years later and by that time the dust had settled and I had to learn how to get back in the trenches again. It can be a process. | |
Dee Sparacio @womenofteal RT @gyncsm: T5: T5: How does treatment for recurrence differ from first-line treatment? What needs to be thought about differently than the first treatment plan? #gyncsm | |
Sarah Temkin @temkins @btrfly12 Ask about the benefits of routine scanning. They may not be worth the risks to everyone. #gyncsm | |
Matthew Katz, MD 🟦 @subatomicdoc @btrfly12 Oh definitely! And I'm not recommending a drug-only approach. Only that people shouldn't have to internalize all the responsibility. Human support is great too, if you have it! #gyncsm | |
Christina Lizaso @btrfly12 T5: As @temkins mentioned earlier, goals of care may change - it can be time to review your values and goals knowing what you know about your first line experience and where you are in life now. #gyncsm | |
Christina Lizaso @btrfly12 RT @subatomicdoc: @btrfly12 Oh definitely! And I'm not recommending a drug-only approach. Only that people shouldn't have to internalize all the responsibility. Human support is great too, if you have it! #gyncsm | |
Dee Sparacio @womenofteal RT @temkins: @btrfly12 Ask about the benefits of routine scanning. They may not be worth the risks to everyone. #gyncsm | |
Matthew Katz, MD 🟦 @subatomicdoc @AdrienneEcana @btrfly12 It can be! And each scheduled scan or visit is a reminder. It stirs things up. #gyncsm | |
Dee Sparacio @womenofteal @temkins @btrfly12 I have annual visits now but only have a CT scan if I have symptoms or feel something is off. #gyncsm | |
Dee Sparacio @womenofteal RT @btrfly12: T5: T5: As @temkins mentioned earlier, goals of care may change - it can be time to review your values and goals knowing what you know about your first line experience and where you are in life now. #gyncsm | |
Matthew Katz, MD 🟦 @subatomicdoc RT @btrfly12: T5: T5: As @temkins mentioned earlier, goals of care may change - it can be time to review your values and goals knowing what you know about your first line experience and where you are in life now. #gyncsm | |
Christina Lizaso @btrfly12 T5: Resource from @CancerDotNet - Dealing With Cancer that Comes Back https://t.co/BpjdDNO0FM #gyncsm | |
Matthew Katz, MD 🟦 @subatomicdoc RT @temkins: @btrfly12 Ask about the benefits of routine scanning. They may not be worth the risks to everyone. #gyncsm | |
EcanaAdrienne @AdrienneEcana #gyncsm T5: I am grateful for all the advancements that have happened in Gyn-Oc in general and hopeful for that that is taking place in EC. I have communities of friends in the right places that I am sure would help guide good decision making for my best outcomes and overall QOL | |
Dee Sparacio @womenofteal RT @btrfly12: T5: T5: Resource from @CancerDotNet - Dealing With Cancer that Comes Back https://t.co/BpjdDNO0FM #gyncsm | |
Martina Murphy, MD @DrMMurphy @AdrienneEcana This really resonates as I think about the overwhelm that comes with a cancer diagnosis & initial treatment. We want patients to be informed but at the same time, it’s so much to process. #gyncsm | |
Matthew Katz, MD 🟦 @subatomicdoc RT @DrMMurphy: @AdrienneEcana This really resonates as I think about the overwhelm that comes with a cancer diagnosis & initial treatment. We want patients to be informed but at the same time, it’s so much to process. #gyncsm | |
Dee Sparacio @womenofteal The @theNCI has good info on their page for endometrial cancer recurrence #gyncsm https://t.co/bmkBU5skM1 | |
Dee Sparacio @womenofteal RT @AdrienneEcana: #gyncsm T5: #gyncsm T5: I am grateful for all the advancements that have happened in Gyn-Oc in general and hopeful for that that is taking place in EC. I have communities of friends in the right places that I am sure would help guide good decision making for my best outcomes and overall QOL | |
Christina Lizaso @btrfly12 T5: How you responded to your initial treatment, may guide your options for treatment of a recurrence. There are also more and more tests available that can guide treatment decisions. #gyncsm | |
Matthew Katz, MD 🟦 @subatomicdoc RT @womenofteal: The @theNCI has good info on their page for endometrial cancer recurrence #gyncsm https://t.co/bmkBU5skM1 | |
Christina Lizaso @btrfly12 RT @womenofteal: The @theNCI has good info on their page for endometrial cancer recurrence #gyncsm https://t.co/bmkBU5skM1 | |
Dee Sparacio @womenofteal RT @DrMMurphy: @AdrienneEcana This really resonates as I think about the overwhelm that comes with a cancer diagnosis & initial treatment. We want patients to be informed but at the same time, it’s so much to process. #gyncsm | |
EcanaAdrienne @AdrienneEcana RT @womenofteal: The @theNCI has good info on their page for endometrial cancer recurrence #gyncsm https://t.co/bmkBU5skM1 | |
GYN Cancer | #GYNCSM @gyncsm T6: Are there resources to help make treatment decisions when a recurrence occurs? Should trials be considered? Should patients ask about genetic and genomic testing? #gyncsm | |
Matthew Katz, MD 🟦 @subatomicdoc RT @gyncsm: T6: T6: Are there resources to help make treatment decisions when a recurrence occurs? Should trials be considered? Should patients ask about genetic and genomic testing? #gyncsm | |
Sarah Temkin @temkins RT @btrfly12: T5: T5: As @temkins mentioned earlier, goals of care may change - it can be time to review your values and goals knowing what you know about your first line experience and where you are in life now. #gyncsm | |
Elizabeth Hornsey @StRogista Info on recurrence of #uterinecancer #EndometrialCancer #wombcancer | |
Dee Sparacio @womenofteal Each patient has different needs and wants in terms of how much info they want at different times during their cancer experience. Most gyn oncs do a great job gauging that. #gyncsm | |
EcanaAdrienne @AdrienneEcana #gyncsm T5: Staying informed and empowered is our best defense. Cancer/ recurrence is unpredictable but leaning on the things and people we depend is not as fragile. | |
Christina Lizaso @btrfly12 T6: #gyncsm -For ovarian, @ClearityFnd has a Treatment Decision Support program https://t.co/cAbXaSVeTE -@theNCI has a Cancer Information Service https://t.co/PIKx2Wz1Cu -@CancerCare has Resource Navigation https://t.co/zYu9BYwVxf | |
Martina Murphy, MD @DrMMurphy @womenofteal Individualizing this approach is so so important. #gyncsm | |
GYN Cancer | #GYNCSM @gyncsm RT @AdrienneEcana: #gyncsm T5: #gyncsm T5: Staying informed and empowered is our best defense. Cancer/ recurrence is unpredictable but leaning on the things and people we depend is not as fragile. | |
GYN Cancer | #GYNCSM @gyncsm RT @womenofteal: Each patient has different needs and wants in terms of how much info they want at different times during their cancer experience. Most gyn oncs do a great job gauging that. #gyncsm | |
Elizabeth Hornsey @StRogista Relates to after recurrence of #ovariancancer | |
Dee Sparacio @womenofteal T5 @ASCO just updated the PARP guideline to reflect latest research on use of PARP as maintenance and in the recurrent setting. https://t.co/Z4NoDLCZ9e #gyncsm 1/3 | |
Dee Sparacio @womenofteal 2/3 Dr Tew PARP inhibitor monotherapy maintenance (second-line or more) may be offered to patients with EOC who have not already received a PARP inhibitor and who have responded to platinum-based therapy regardless of BRCA mutation status.#gyncsm | |
Christina Lizaso @btrfly12 T6: Anytime can be a great time to consider a clinical trial, but especially when experiencing a recurrence. It can be overwhelming, but there are great resources out there for those with interest in trials. #gyncsm | |
Dee Sparacio @womenofteal 3/3 PARP inhibitor monotherapy should not be routinely offered to patients for the treatment of recurrent platinum-sensitive or platinum-resistant EOC. #gyncsm | |
Dee Sparacio @womenofteal RT @AdrienneEcana: #gyncsm T5: #gyncsm T5: Staying informed and empowered is our best defense. Cancer/ recurrence is unpredictable but leaning on the things and people we depend is not as fragile. | |
Sarah Temkin @temkins RT @btrfly12: T6: T6: Anytime can be a great time to consider a clinical trial, but especially when experiencing a recurrence. It can be overwhelming, but there are great resources out there for those with interest in trials. #gyncsm | |
Dee Sparacio @womenofteal RT @btrfly12: T6: T6: #gyncsm -For ovarian, @ClearityFnd has a Treatment Decision Support program https://t.co/cAbXaSVeTE -@theNCI has a Cancer Information Service https://t.co/PIKx2Wz1Cu -@CancerCare has Resource Navigation https://t.co/zYu9BYwVxf | |
Dee Sparacio @womenofteal RT @btrfly12: T6: T6: Anytime can be a great time to consider a clinical trial, but especially when experiencing a recurrence. It can be overwhelming, but there are great resources out there for those with interest in trials. #gyncsm | |
Christina Lizaso @btrfly12 T6: Genetic and genomic testing has come a long way for many cancers. @PanCAN has an amazing tumor profiling program for pancreatic cancer. Patients should ask about what testing can be done. #gyncsm | |
EcanaAdrienne @AdrienneEcana RT @btrfly12: T6: T6: Anytime can be a great time to consider a clinical trial, but especially when experiencing a recurrence. It can be overwhelming, but there are great resources out there for those with interest in trials. #gyncsm | |
Dee Sparacio @womenofteal RT @btrfly12: T6: T6: Genetic and genomic testing has come a long way for many cancers. @PanCAN has an amazing tumor profiling program for pancreatic cancer. Patients should ask about what testing can be done. #gyncsm | |
GYN Cancer | #GYNCSM @gyncsm T7: What are some tips and resources to help patients and families cope with the emotional and physical impact of a recurrence? #gyncsm | |
Christina Lizaso @btrfly12 T7: @cancercare has oncology social workers and @stepsthrough is a program for ovarian cancer patients needing emotional support. #gyncsm | |
Dee Sparacio @womenofteal @gyncsm #gyncsm Patients - esp #ovca and Endometrial should ask about genetic testing. Trials should be considered too. The @NCCN guidelines are helpful when looking at treatments for recurrence. And of course an in depth conversation about your options with your gyn onc. | |
Dee Sparacio @womenofteal RT @gyncsm: T7: T7: What are some tips and resources to help patients and families cope with the emotional and physical impact of a recurrence? #gyncsm | |
Dee Sparacio @womenofteal RT @btrfly12: T7: T7: @cancercare has oncology social workers and @stepsthrough is a program for ovarian cancer patients needing emotional support. #gyncsm | |
GYN Cancer | #GYNCSM @gyncsm As we wrap up our #gyncsm chat on Recurrence, feel free to continue adding your responses and thoughts on the topics. You can also sharing any closing thoughts or "Today I Learned" starting your tweet with "TIL:" | |
Martina Murphy, MD @DrMMurphy @gyncsm Clinical trials are always worth considering but especially at times of recurrence. And yes - in our current era, genomic & molecular testing is really important for treatment & counseling considerations. Ask your MD about this of they don’t bring it up first. #gyncsm | |
Christina Lizaso @btrfly12 RT @womenofteal: @gyncsm #gyncsm Patients - esp #ovca and Endometrial should ask about genetic testing. Trials should be considered too. The @NCCN guidelines are helpful when looking at treatments for recurrence. And of course an in depth conversation about your options with your gyn onc. | |
Sarah Temkin @temkins 💯 #gyncsm | |
Christina Lizaso @btrfly12 RT @DrMMurphy: @gyncsm Clinical trials are always worth considering but especially at times of recurrence. And yes - in our current era, genomic & molecular testing is really important for treatment & counseling considerations. Ask your MD about this of they don’t bring it up first. #gyncsm | |
Martina Murphy, MD @DrMMurphy YES. #gyncsm | |
GYN Cancer | #GYNCSM @gyncsm Save the date for our next #gyncsm chat on Wednesday, December 9th at 8pmET when we’ll discuss “Looking Back and Looking Forward”. We hope to see you then. | |
Idalid "Ivy" Franco MD MPH @IvyRadOncMD RT @gyncsm: Welcome to #gyncsm - a passionate community for gynecologic cancer survivors, caregivers, advocates and health care providers. | |
Dee Sparacio @womenofteal T7 #gyncsm Emotionally I think talking to another women with a recurrence helps - Support groups and orgs like @CancerHopeNet , @SHAREing can provide information and support. | |
Christina Lizaso @btrfly12 RT @DrMMurphy: Excellent question worth exploring. #OncTwitter - what is your approach to discussions around #cancer recurrence risk? | |
Idalid "Ivy" Franco MD MPH @IvyRadOncMD RT @gyncsm: We welcome all those joining in as well as those here to “listen in”. We'd love you to tweet #gyncsm so we know you are here and you can always tweet, DM or email us with questions/comments after the chat is over if you like. See our blog for info: https://t.co/nDbbZnerzF | |
Dee Sparacio @womenofteal RT @DrMMurphy: @gyncsm Clinical trials are always worth considering but especially at times of recurrence. And yes - in our current era, genomic & molecular testing is really important for treatment & counseling considerations. Ask your MD about this of they don’t bring it up first. #gyncsm | |
Elizabeth Hornsey @StRogista Totally agree | |
Dee Sparacio @womenofteal RT @gyncsm: Save the date for our next #gyncsm chat on Wednesday, December 9th at 8pmET when we’ll discuss “Looking Back and Looking Forward”. We hope to see you then. | |
Elizabeth Hornsey @StRogista RT @womenofteal: Each patient has different needs and wants in terms of how much info they want at different times during their cancer experience. Most gyn oncs do a great job gauging that. #gyncsm | |
Dee Sparacio @womenofteal We are grateful to all our participants and supporters and wish you all a very Happy Thanksgiving! #gyncsm | |
GYN Cancer | #GYNCSM @gyncsm Thanks for joining along for our chat on Recurrence. As always, remember to tweet things of interest with hashtag #gyncsm to keep the conversation going between chats. | |
Dee Sparacio @womenofteal #gyncsm Thanksgiving is also National Family Health Day. Do you know your family health history? | |
Dee Sparacio @womenofteal RT @gyncsm: Thanks for joining along for our chat on Recurrence. As always, remember to tweet things of interest with hashtag #gyncsm to keep the conversation going between chats. | |
Dee Sparacio @womenofteal Grateful for our #gyncsm co-moderators! @btrfly12 @ShannonWestin @temkins @journeycancer @DrBeckerSchutte | |
GYN Cancer | #GYNCSM @gyncsm And be sure to check the #gyncsm blog later for the chat summary and resource links shared. Thanks @womenofteal for the amazing job you do on the blog. | |
Dee Sparacio @womenofteal Remember to check https://t.co/Df2f7OkWSD for a transcript of the chat and resources #gyncsm | |
GYN Cancer | #GYNCSM @gyncsm RT @womenofteal: T7 #gyncsm Emotionally I think talking to another women with a recurrence helps - Support groups and orgs like @CancerHopeNet , @SHAREing can provide information and support. | |
Dee Sparacio @womenofteal @PowerOvarian is holding a Research Advocacy Zoom Information Session with an ovarian cancer researcher and OC research advocate. 11/ 20/2022 at 8:00 a.m. Pacific / 11:00 a.m. Eastern via Zoom https://t.co/2EVU3xK5dK #gyncsm | |
Elizabeth Hornsey @StRogista RT @womenofteal: Dee here! Dx with #ovca Stage3B 2005, recurrence 2008, Ovarian Cancer research advocate, blogger, co-Author of “100 Questions and Answers about Ovarian cancer” & co-moderator #gyncsm | |
Christina Lizaso @btrfly12 RT @womenofteal: T7 #gyncsm Emotionally I think talking to another women with a recurrence helps - Support groups and orgs like @CancerHopeNet , @SHAREing can provide information and support. | |
Idalid "Ivy" Franco MD MPH @IvyRadOncMD @btrfly12 This is so true. We want to remain optimistic and provide hope, while also giving patients the information they need to make the best decision for them. #gyncsm | |
Christina Lizaso @btrfly12 RT @gyncsm: Save the date for our next #gyncsm chat on Wednesday, December 9th at 8pmET when we’ll discuss “Looking Back and Looking Forward”. We hope to see you then. | |
Dee Sparacio @womenofteal @womenofteal: Ovarian Cancer advocates - Two opportunities @NRGonc looking for candidates for the Oncology Patient Advocate Committee https://t.co/hohkodFa4o 1 /2 #gyncsm | |
Dee Sparacio @womenofteal 2/2 @PowerOvarian Looking for ovarian cancer advocate (patient, survivor, family member, caregiver, previvor, or person touched by ovarian cancer) to attend the @AACR Annual Meeting, April 14-19, 2023, in Orlando Deadline 12/31 https://t.co/fRWyjGpraF 2/2 #gyncsm | |
GYN Cancer | #GYNCSM @gyncsm Save the date for our next #gyncsm chat on Wednesday, December 14th at 8pmET when we’ll discuss “Looking Back and Looking Forward”. We hope to see you then. | |
Dee Sparacio @womenofteal RT @gyncsm: Save the date for our next #gyncsm chat on Wednesday, December 14th at 8pmET when we’ll discuss “Looking Back and Looking Forward”. We hope to see you then. | |
NCI Cancer Stats @NCICancerStats Over half of all new #OvarianCancer cases are diagnosed in the distant stage, meaning the disease has spread to other organs and tissues far away from the ovaries. Visit our Cancer Stat Facts sheet to learn more: https://t.co/HWrp6HOzTG #GynCSM https://t.co/Y8Fo5V47vS | |
Dee Sparacio @womenofteal #gyncsm Tweet deck changed its format - I like it - but it seems a little slow at responding. Seemed I was always catching up on RT / responding to the questions. See everyone next month. | |
Idalid "Ivy" Franco MD MPH @IvyRadOncMD RT @gyncsm: Save the date for our next #gyncsm chat on Wednesday, December 14th at 8pmET when we’ll discuss “Looking Back and Looking Forward”. We hope to see you then. | |
Christina Lizaso @btrfly12 RT @IvyRadOncMD: @btrfly12 This is so true. We want to remain optimistic and provide hope, while also giving patients the information they need to make the best decision for them. #gyncsm | |
Idalid "Ivy" Franco MD MPH @IvyRadOncMD RT @womenofteal: Remember to check https://t.co/Df2f7OkWSD for a transcript of the chat and resources #gyncsm | |
Christina Lizaso @btrfly12 RT @DrMMurphy: @btrfly12 I wish we understood more about the diet & exercise piece. Hopefully more work on this in the future. Things that are within our control can really feel empowering. #gyncsm | |
Dee Sparacio @womenofteal Especially grateful this month for my partner @btrfly12 who makes these chats and our community run so smoothly. She also crafts the best questions that get such great responses. Thank you, Christina ! #gyncsm | |
EcanaAdrienne @AdrienneEcana RT @womenofteal: 2/2 @PowerOvarian Looking for ovarian cancer advocate (patient, survivor, family member, caregiver, previvor, or person touched by ovarian cancer) to attend the @AACR Annual Meeting, April 14-19, 2023, in Orlando Deadline 12/31 https://t.co/fRWyjGpraF 2/2 #gyncsm | |
Christina Lizaso @btrfly12 #gyncsm TIL: Recurrence is a tough topic, but avoiding the conversation can make things worse. Here's to having the hard conversations and mixing hope with being grounded. | |
Christina Lizaso @btrfly12 #gyncsm MT @kaflang: Genetic counselor here-wanted to chime in & mention there may have been updates to genetic testing options for inherited mutations (aka germline testing) depending on when someone was 1st tested. Check in w/ genetics provider to make sure your test is up2date | |
Christina Lizaso @btrfly12 It's the month to be grateful, but I'm always grateful to @womenofteal for a great partnership on #gyncsm and to all those who participate and support cancer social media. | |
EDGAR ANDRES PULIDO @edgarpugil RT @JNCI_Now: In this @JNCI_Now study, Hu et al analyze the impact of #HPV vaccination on the screening for cervical precancer among vaccinated women reaching screening age. #gyncsm #cervicalcancer Read more here: https://t.co/Ez7tNOKWbB https://t.co/kSGYG9Kb5d | |
Dee Sparacio @womenofteal RT @IvyRadOncMD: @btrfly12 This is so true. We want to remain optimistic and provide hope, while also giving patients the information they need to make the best decision for them. #gyncsm | |
Dee Sparacio @womenofteal RT @btrfly12: #gyncsm TIL: #gyncsm TIL: Recurrence is a tough topic, but avoiding the conversation can make things worse. Here's to having the hard conversations and mixing hope with being grounded. | |
Dee Sparacio @womenofteal RT @btrfly12: #gyncsm MT @kaflang: #gyncsm MT @kaflang: Genetic counselor here-wanted to chime in & mention there may have been updates to genetic testing options for inherited mutations (aka germline testing) depending on when someone was 1st tested. Check in w/ genetics provider to make sure your test is up2date |
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