#BCSM Transcript
Healthcare social media transcript of the #BCSM hashtag.
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See #BCSM Influencers/Analytics.
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Dr. Deanna Attai @DrAttai Hello in advance to all who are joining tonight! Please take a few minutes to introduce yourselves and I'll post some background info #bcsm | |
Sharon L Bober @DrSharonBober @DrAttai @stales Good evening! Happy to be with you all and looking forward to frank chat about sex after cancer. #bcsm | |
Dr. Deanna Attai @DrAttai @DrSharonBober Thanks so much for agreeing to participate - topic will be of interest I'm sure! #bcsm | |
Dr_Dana @Dr_Dana @DrAttai @stales Good evening 👋🏻 Breast surgeon in Little Rock.Listening and learning. #bcsm | |
Dr. Deanna Attai @DrAttai For those new to a tweet chat, here's some info on how to participate https://t.co/3edMkx5lEg #bcsm | |
Dr. Deanna Attai @DrAttai @Dr_Dana hi there!! #bcsm | |
Inspire @InspireIsHealth Hello again to the #BCSM community, John Novack here from Inspire. | |
Tambre Leighn, MA, CPC she/her @tambreleighn #bcsm Patient advocate and certified coach focused on improving the patient and caregiver experience through coaching and advocacy in healthcare...and clearly off my game tonight jumping the gun and forgetting the hashtag. Sigh. It's 2020. | |
Tambre Leighn, MA, CPC she/her @tambreleighn #bcsm | |
PTCOG-NA @PTCOGNA Check out this fantastic discussion about #proton therapy for breast cancers. It started with this #ASTRO20 abstract, which attempts to identify when proton therapy may be more cost effective than radiotherapy using photons. #RadOnc #bcsm @ASTRO_org https://t.co/TGhiTuQ9Uk | |
Dr. Deanna Attai @DrAttai @ndenduluri1 @DrSharonBober Hello Neelima! Thanks for joining #bcsm | |
Sharon L Bober @DrSharonBober @DrAttai @JPCRR Congrats -that is fantastic! #bcsm | |
Dr. Deanna Attai @DrAttai @tambreleighn it sure is... but thanks for joining #bcsm | |
Dr. Kelly Shanahan @stage4kelly Hi #bcsm fam 👋🏻 Kelly, former ob/gyn living with MBC x 7 yrs, checking in from finally chilly Lake Tahoe. | |
Dr. Deanna Attai @DrAttai We'll get started with T1 in just a few minutes, please keep introducing yourselves #bcsm | |
Dr. Deanna Attai @DrAttai @stage4kelly hi Kelly nice to see you this evening #bcsm | |
Tambre Leighn, MA, CPC she/her @tambreleighn @stage4kelly So great to see you @stage4kelly Sending a big virtual hug to warm you up in chilly Tahoe. #bcsm | |
Arthur L. Garnes Society @GarnesSociety RT @Breastcancerorg: What do women of color need to know before breast reconstruction? @DrParisButler, @DrD_BreastDoc, @DrMoniqueGary, and Dr. Donna-Marie Manasseh of @MaimonidesMC discuss health equity barriers, finding the right surgeon, and more. #breastcancer #bcsm https://t.co/VKzyv9WFmg https://t.co/scf5PY1Cah | |
Matthew Katz, MD 🟦 @subatomicdoc @DrAttai Good evening! Matt Katz, radiation oncologist in MA/NH. Taking a break from #ASTRO20 to join #bcsm. Hi everyone! | |
Dr. Deanna Attai @DrAttai @ndenduluri1 @JPCRR thank you! #bcsm | |
Ishwaria Subbiah, MD MS @IshwariaMD @DrAttai @stales Hi #bcsm. #supportivecare doc in Houston listening and learning tonight (and every night) | |
Dr. Deanna Attai @DrAttai @subatomicdoc hi Matt, thanks for joining - looks like (from the tweets) #ASTRO20 has been a good meeting so far #bcsm | |
IBC Research Fdn @IBCResearch Hi all! Ginny, RN dx with #IBC in 1994 (dark ages). Tweet as non-profit that consumes life 24/7 😉#BCSM | |
Dr. Deanna Attai @DrAttai @IshwariaMD thanks for joining! #bcsm | |
Dr. Deanna Attai @DrAttai @IBCResearch Hello Ginny! #bcsm | |
Janice Cowden @JaniceTNBCmets Hello from SW Florida. Janice, living with tnMBC x 4.5 years, NED nearly 4 yrs. Thanks for hosting @DrAttai! I hope @stales is enjoying the night off. Looking forward to tonight’s chat ~ here to listen & learn, until I can’t keep my eyes open one minute longer! 🥱 #bcsm | |
Dennis Keim @denniskeim Howdy again, #bcsm peeps. Stage one in 2013. Still NED in NE. Good vibes to all. | |
Matthew Katz, MD 🟦 @subatomicdoc @DrAttai HI Deanna, yes - very interesting new research. Not as fun as in person, but actually I'm learning more because @ASTRO_org invested in a great platform. High value. #bcsm | |
IBC Research Fdn @IBCResearch @teaminspire Hey there John! #BCSM | |
Dr. Deanna Attai @DrAttai For those who want to follow along: https://t.co/dhWxEYRzkA #bcsm | |
Matthew Katz, MD 🟦 @subatomicdoc @DrSharonBober @DrAttai Hey Sharon! #bcsm https://t.co/i9mIOfCk48 | |
Helen M. Johnson, MD, IBCLC @HelenMJohnsonMD @DrAttai Surgery resident planning a career in breast surgery. Looking forward to learning #bcsm | |
Dr. Deanna Attai @DrAttai @HelenMJohnsonMD welcome! It's a great field #bcsm | |
RadiOncBOTjp @RadiOncBOTjp RT @ggmspeijer: | |
IBC Research Fdn @IBCResearch @DrAttai Hello & thanks for handling things tonight @DrAttai Hope @stales is still celebrating! 🥳😍💃 #bcsm | |
Sharon L Bober @DrSharonBober @DrAttai I think sexual health is at the intersection of mind/body & relationship factors. When sexual health is disrupted, its really important to figure out all the pieces...often folks only hear bits and pieces like "use lube" or "use it or lose it" & we need a holistic approach! #bcsm | |
Kathy Gori @kathygori Hey there all! 2x bc’er checking in from the hurricane zone otherwise known as Nor Ca 🍷 country. I stayed up all night last night (who could sleep with/ freight train winds ) and kept watch I’m now exhausted but the winds have stopped #bcsm | |
Kathy Gori @kathygori @denniskeim Hey Dennis!!! #bcsm | |
Dr. Deanna Attai @DrAttai @DrSharonBober Indeed - and I'm sure part of the challenge to addressing sexual health issues is there are so many components - physical, mental and more #bcsm | |
IBC Research Fdn @IBCResearch @kathygori Hope you can stay safe @kathygori You folks have been through so much already, it's time for a break...a long one #bcsm | |
Kathy Gori @kathygori @stage4kelly Did you guys have terrible winds last night? #bcsm | |
Matthew Katz, MD 🟦 @subatomicdoc RT @DrAttai: @DrSharonBober Indeed - and I'm sure part of the challenge to addressing sexual health issues is there are so many components - physical, mental and more #bcsm | |
Sharon L Bober @DrSharonBober @DrAttai I also get concerned that we often take a very narrow approach to defining "sexual health" meaning sexual intercourse. Sexual health is as much about how we think and feel, our identity, body image as it is about any physical activity. #bcsm | |
Dr. Deanna Attai @DrAttai @denniskeim @kathygori hey. now - we're a legal chat - no voting often! #bcsm | |
Lauren Nye @DrLaurenNye Listen to this rockstar @KUcancercenter #bcsm researcher. “I see a need for ACTION more than I see a need for awareness...most people in the country and the world are aware of breast cancer, perhaps not as aware as they should be of how many are still dying from this disease.” 🙌🏻 | |
Matthew Katz, MD 🟦 @subatomicdoc RT @DrSharonBober: @DrAttai I also get concerned that we often take a very narrow approach to defining "sexual health" meaning sexual intercourse. Sexual health is as much about how we think and feel, our identity, body image as it is about any physical activity. #bcsm | |
Dr. Deanna Attai @DrAttai @denniskeim @kathygori don't get us into trouble! #bcsm | |
Dennis Keim @denniskeim @DrAttai @kathygori Okay, no more Midwestern voting humor attempts. :) #bcsm | |
Tambre Leighn, MA, CPC she/her @tambreleighn @DrSharonBober @DrAttai Yes! And intimacy...there is so much room and need for intimacy as part of the conversation around sexual health #bcsm | |
Dr. Deanna Attai @DrAttai RT @tambreleighn: @DrSharonBober @DrAttai Yes! And intimacy...there is so much room and need for intimacy as part of the conversation around sexual health #bcsm | |
Sharon L Bober @DrSharonBober @tambreleighn @DrAttai I totally agree. I also think many couples feel very unsure how to communicate about changes in intimacy/sexuality because people may be unsure what to say, or don't want to hurt feelings. Sometimes its helpful to have a little guidance about how to start talking....#bcsm | |
SFDiva @SFDiva2 @DrAttai @DrSharonBober How does sexual health relate to the broader issues of chemo and AI/tamo induced menopause? #bcsm | |
Jennifer Plichta MD (she/her) @JenniferPlichta RT @Breastcancerorg: What do women of color need to know before breast reconstruction? @DrParisButler, @DrD_BreastDoc, @DrMoniqueGary, and Dr. Donna-Marie Manasseh of @MaimonidesMC discuss health equity barriers, finding the right surgeon, and more. #breastcancer #bcsm https://t.co/VKzyv9WFmg https://t.co/scf5PY1Cah | |
Matthew Katz, MD 🟦 @subatomicdoc RT @DrSharonBober: @tambreleighn @DrAttai I totally agree. I also think many couples feel very unsure how to communicate about changes in intimacy/sexuality because people may be unsure what to say, or don't want to hurt feelings. Sometimes its helpful to have a little guidance about how to start talking....#bcsm | |
Kathy Gori @kathygori @denniskeim @DrAttai We voted about a week ago and got my notification that the registrar of votes got my ballot and it’s being counted. Thanks Ca! #bcsm | |
Jennifer Douglas @mmejendouglas Hi everyone! Just checking in now. Looks like a good dialogue tonight. @stales #bcsm | |
Dr. Deanna Attai @DrAttai #bcsm | |
Dr. Deanna Attai @DrAttai don't forget the #bcsm hashtag everyone! | |
Jennifer Douglas @mmejendouglas @DrAttai Agreed! This is key to helping us make progress and improve our sexual health. #bcsm | |
Dr. Deanna Attai @DrAttai #bcsm | |
Lauren Nye @DrLaurenNye @DrAttai @DrSharonBober T2 the topic is part of survivorship guidelines, so it can be framed in that way. I find it is a more natural transition to start by asking about physical symptoms (dryness, pain) and then transitioning in to libido, other sexual health concerns. #bcsm | |
Dennis Keim @denniskeim @kathygori @DrAttai Good to hear! I got my ballot in the mail the other day. I still need to get the judges sorted. We can drop our mail-ins at our local libraries and can check online to make sure they got them okay. #bcsm | |
Dr. Deanna Attai @DrAttai @DrLaurenNye @DrSharonBober thanks for chiming in! #bcsm | |
Jennifer Douglas @mmejendouglas @DrSharonBober @SFDiva2 @DrAttai I was thankful that I had read about these challenges before starting treatment so that I could be informed and talk with my providers. #bcsm | |
Beverly A. Zavaleta MD @BZavaletaMD @DrSharonBober @SFDiva2 @DrAttai Agree- very little discussion beforehand #bcsm | |
Beverly A. Zavaleta MD @BZavaletaMD RT @DrLaurenNye: @DrAttai @DrSharonBober T2 the topic is part of survivorship guidelines, so it can be framed in that way. I find it is a more natural transition to start by asking about physical symptoms (dryness, pain) and then transitioning in to libido, other sexual health concerns. #bcsm | |
Sharon L Bober @DrSharonBober @DrLaurenNye @DrAttai For sure. Every week I meet with women who are struggling with low libido but no one has helped them manage discomfort and pain with and without sexual activity. No one has desire when sex hurts and its crazy that we don't give everyone education about vaginal health #bcsm | |
Matthew Katz, MD 🟦 @subatomicdoc @DrLaurenNye @DrAttai @DrSharonBober T2. Are there any good guidelines for clinicians on how best to discuss sexual health concerns? #bcsm | |
Dr Jenny Ng Pfizer Vaccinated 💉🦠 @drjennyng RT @mssrfcali: I’ve reached 25% of my @gofundme goal! Please help me reach or exceed my fundraising goal. Share/RT on any of your social media platforms, blogs, podcasts. Thanks so much! 🙏🏻💗 #breastcancer #gofundme #BreastCancerAwarenessMonth #mbc #tnbc #bcsm https://t.co/BSXwckTZeV | |
Kathy Gori @kathygori @denniskeim @DrAttai Usually, we go down and drop our ballot off , some areas out in the country here don’t have close polling places.. So we go to the veterans hall where they have drop boxes but I was concerned about looooong lines this year so we just mailed em in. #bcsm | |
Matthew Katz, MD 🟦 @subatomicdoc RT @DrSharonBober: @DrLaurenNye @DrAttai For sure. Every week I meet with women who are struggling with low libido but no one has helped them manage discomfort and pain with and without sexual activity. No one has desire when sex hurts and its crazy that we don't give everyone education about vaginal health #bcsm | |
Jennifer Douglas @mmejendouglas This is so sad. It is really hard to enjoy intimacy with the combination of low desire and pain. Then you add cancer fatigue and it becomes even more difficult #bcsm | |
Erin Maynard Phipps @buttersy Let’s do it for this wonderful person!!! ♥️♥️♥️♥️ | |
Sharon L Bober @DrSharonBober @subatomicdoc @DrLaurenNye @DrAttai YES! Thanks for asking. There is a great paper from the @cancersexnet that has an excellent clinical checklist that you can use for guiding inquiry...let me try to find it and pull it up! #bcsm | |
Jennifer Douglas @mmejendouglas @subatomicdoc @DrLaurenNye @DrAttai @DrSharonBober I was extremely grateful to my doctors who listened to me and took the time to care and help me manage symptoms. #bcsm | |
SFDiva @SFDiva2 @DrAttai Is there any standard of care around these issues? if no, what orgs are on the forefront of this? #bcsm | |
Matthew Katz, MD 🟦 @subatomicdoc @DrSharonBober @DrLaurenNye @DrAttai @cancersexnet Great, thank you! #bcsm | |
Jennifer Douglas @mmejendouglas @SFDiva2 @DrAttai Ohh, good question! #bcsm | |
Dr. Deanna Attai @DrAttai cc @DrSharonBober @IshwariaMD @DrLaurenNye #bcsm | |
Beverly A. Zavaleta MD @BZavaletaMD These issues get dwarfed by #1 -trying not to die early in the diagnosis #2-cancer fatigue as time goes by, meaning - feeling sick of being sick & wanting to get back to “normal.” It’s exhausting to spend so much time/energy betting better. Worth it! But hard to keep on #bcsm | |
Sharon L Bober @DrSharonBober @mmejendouglas Agree but I think there is also room for creativity when it comes to exploring what is pleasurable...maybe looks different that it used to but often plenty of opportunity to expand the repertoire! #bcsm | |
Jennifer Douglas @mmejendouglas @DrSharonBober Creativity is always a good thing! #bcsm | |
Tambre Leighn, MA, CPC she/her @tambreleighn #bcsm | |
AdanRivas @ARIVAS863 Help Stephanie rach the rest of her goal. | |
Jennifer Douglas @mmejendouglas I think I’ll need to read this! #bcsm | |
Tambre Leighn, MA, CPC she/her @tambreleighn @mmejendouglas @drdonsdizon is fabulous! #bcsm | |
Kathy Gori @kathygori The first time I had BC I was in my 30s so my drs at cedars asked my husband and me to make a video discussing sex after cancer. So, I can say we made a sex tape but everybody kept their clothes on. The problem back then was there were not many things for young patients #bcsm | |
Tambre Leighn, MA, CPC she/her @tambreleighn #bcsm | |
Jennifer Douglas @mmejendouglas Good to know! #bcsm | |
Larissa Nekhlyudov @DrN_CancerPCP @subatomicdoc @DrLaurenNye @DrAttai @DrSharonBober See @asco endorsement of @CancerCare_ON guideline. https://t.co/xg28RK6Jvp @ASCO_pubs #bcsm | |
Dr. Donna Charlevoix 🌻 @dcharlevo Hi everyone. Joining late. MBC since 7/2019. Very interested in the topic tonight - struggling mightily with all the meds. #bcsm | |
Dr. Kelly Shanahan @stage4kelly @subatomicdoc @DrLaurenNye @DrAttai @DrSharonBober Start with “these treatments are know to cause sexual side effects like [vaginal dryness, vaginal stenosis with XRT to the pelvis, decreased libido, erectile dysfunction for the men with BC, etc]. Are you experiencing any of these?” NORMALIZE talking about sex/sexuality!! #bcsm | |
Jennifer Douglas @mmejendouglas So many good resources tonight! #bcsm | |
Beverly A. Zavaleta MD @BZavaletaMD #bcsm | |
Beverly A. Zavaleta MD @BZavaletaMD RT @DrN_CancerPCP: @subatomicdoc @DrLaurenNye @DrAttai @DrSharonBober See @asco endorsement of @CancerCare_ON guideline. https://t.co/xg28RK6Jvp @ASCO_pubs #bcsm | |
Dr. Deanna Attai @DrAttai #bcsm | |
Lauren Nye @DrLaurenNye @DrAttai @DrSharonBober @IshwariaMD #bcsm ACS/ASCO guidelines include sexual health and provide some basic starting points for management. https://t.co/VKaNW9y9OK | |
Jennifer Douglas @mmejendouglas @DrSharonBober @BZavaletaMD Oh that made me laugh!!! In a serious way, acknowledging the importance of this issue #bcsm | |
Sharon L Bober @DrSharonBober @DrN_CancerPCP @subatomicdoc @DrLaurenNye @DrAttai @ASCO @CancerCare_ON @ASCO_pubs The problem is NOT a lack of guidelines! That is what is fascinating...its a cultural issue. And someone sexual health is simply never considered as important as other issues...."never enough time"....#bcsm | |
Beverly A. Zavaleta MD @BZavaletaMD I like this approach/ wording. #bcsm | |
Jennifer Douglas @mmejendouglas This is key! #bcsm | |
Dr. Kelly Shanahan @stage4kelly @DrLaurenNye @DrAttai @DrSharonBober Of course, those of us with #metastatic disease are often excluded from survivorship programs, but that’s a whole ‘nother topic! #bcsm | |
Dr. Deanna Attai @DrAttai T3 @DrSharonBober What works? What are some evidence-based practices that help patients manage sexual side effects from treatment? #bcsm | |
Dr. Kelly Shanahan @stage4kelly @UppityCancerP @drdonsdizon Love Dr Don @drdonsdizon! #bcsm | |
Matthew Katz, MD 🟦 @subatomicdoc RT @DrSharonBober: @DrN_CancerPCP @subatomicdoc @DrLaurenNye @DrAttai @ASCO @CancerCare_ON @ASCO_pubs The problem is NOT a lack of guidelines! That is what is fascinating...its a cultural issue. And someone sexual health is simply never considered as important as other issues...."never enough time"....#bcsm | |
Matthew Katz, MD 🟦 @subatomicdoc RT @DrN_CancerPCP: @subatomicdoc @DrLaurenNye @DrAttai @DrSharonBober See @asco endorsement of @CancerCare_ON guideline. https://t.co/xg28RK6Jvp @ASCO_pubs #bcsm | |
Jennifer Douglas @mmejendouglas More good resources! I’m going to have a lot of reading! #bcsm | |
Janice Cowden @JaniceTNBCmets Truth 👇🏻 #bcsm | |
Sharon L Bober @DrSharonBober @stage4kelly @subatomicdoc @DrLaurenNye @DrAttai This is our paper with our clinical checklist!https://t.co/hH7iKaS80Q #bcsm | |
Dr. Deanna Attai @DrAttai @stage4kelly @DrLaurenNye @DrSharonBober that's a topic when we have a few hours to cover it, for sure #bcsm | |
Missy🌸Ryan @meoryan #bcsm. Checking in late from the soon to be ground zero for the latest hurricane this year. 5 years NED | |
Beverly A. Zavaleta MD @BZavaletaMD A1 Another issue is the parter’s adjustments (to the cancer, the changes in the patient, the relationship) Partners also have feelings, bodies, needs. There is a need to start fresh in some cases, reacquaint. #bcsm | |
Dr. Donna Charlevoix 🌻 @dcharlevo @stage4kelly @subatomicdoc @DrLaurenNye @DrAttai @DrSharonBober As a patient I'd really appreciate this approach. Factual and open ended allowing for just about any kind of response. #bcsm | |
Matthew Katz, MD 🟦 @subatomicdoc @stage4kelly @DrLaurenNye @DrAttai @DrSharonBober I do discuss those issues for pelvic radiation. For breast radiation, usually it's focused on radiation effects on cosmetic appearance, feel, and changes in nipple sensitivity during and after treatment #bcsm | |
Ishwaria Subbiah, MD MS @IshwariaMD RT @DrLaurenNye: @DrAttai @DrSharonBober @IshwariaMD #bcsm ACS/ASCO guidelines include sexual health and provide some basic starting points for management. https://t.co/VKaNW9y9OK | |
Jennifer Douglas @mmejendouglas @meoryan Good to see you! #bcsm | |
Beverly A. Zavaleta MD @BZavaletaMD RT @DrSharonBober: @DrN_CancerPCP @subatomicdoc @DrLaurenNye @DrAttai @ASCO @CancerCare_ON @ASCO_pubs The problem is NOT a lack of guidelines! That is what is fascinating...its a cultural issue. And someone sexual health is simply never considered as important as other issues...."never enough time"....#bcsm | |
Matthew Katz, MD 🟦 @subatomicdoc RT @DrSharonBober: @stage4kelly @subatomicdoc @DrLaurenNye @DrAttai This is our paper with our clinical checklist!https://t.co/hH7iKaS80Q #bcsm | |
Larissa Nekhlyudov @DrN_CancerPCP @DrSharonBober @subatomicdoc @DrLaurenNye @DrAttai @ASCO @CancerCare_ON @ASCO_pubs Agree, but also (you’ve heard me say this @DrSharonBober), clinicians are afraid to ask if they don’t know what to do with the information. Of course, having resources is great, but having you nearby is even better!! 🥰#bcsm | |
Leslie @Leslieks @DrAttai @DrSharonBober Awww, man! And I’m late to the party tonight! This is a topic I really need help with. #bcsm | |
Dr. Deanna Attai @DrAttai @subatomicdoc @stage4kelly @DrLaurenNye @DrSharonBober although alterations in nipple sensitivity can have a big impact on sexual function. Something we discuss B4 surgery especially with periareolar incision or nipple-sparing mastectomy #bcsm | |
Dr. Deanna Attai @DrAttai #bcsm | |
Sharon L Bober @DrSharonBober @DrN_CancerPCP @subatomicdoc @DrLaurenNye @DrAttai @ASCO @CancerCare_ON @ASCO_pubs I appreciate that Larissa. But there are more and more resources on-line. And clinicians need to prioritize developing a referral network!! #bcsm | |
Leslie @Leslieks @DrSharonBober @DrAttai But sometimes we WANT intercourse! #bcsm | |
Dr. Deanna Attai @DrAttai @UppityCancerP @SamTalksSex thanks for sharing! #bcsm | |
Jennifer Douglas @mmejendouglas @DrAttai @subatomicdoc @stage4kelly @DrLaurenNye @DrSharonBober Even without surgical changes to the nipple, there are also psychological issues I experience. I think I’m still traumatized with the experience. Plus radiation made my whole breast sore for a while. #bcsm | |
Maryam Lustberg MD MPH @maryam_lustberg Important point for both clinicians and patients #survonc #sexualhealth cc @DrSharonBober @AllisonQuick9 | |
Sharon L Bober @DrSharonBober @DrAttai @subatomicdoc @stage4kelly @DrLaurenNye I am surprised at how many women are not prepared for loss of sensation - we put so much emphasis on the visual outcomes and we don't talk enough sensation IMHO. Also women often could use support with how to navigate those changes with a partner. #bcsm | |
Dr. Kelly Shanahan @stage4kelly @DrN_CancerPCP @DrSharonBober @subatomicdoc @DrLaurenNye @DrAttai @ASCO @CancerCare_ON @ASCO_pubs More conversations between oncologists and gynecologists and PCPs would be helpful #bcsm | |
Beverly A. Zavaleta MD @BZavaletaMD @DrSharonBober @DrAttai @ml_muliebrity is a great resource for pelvic floor rehab in Ireland. #bcsm #bccww | |
Jennifer Douglas @mmejendouglas I like this idea. What else besides lube will help?#bcsm | |
Leslie @Leslieks @DrSharonBober @SFDiva2 @DrAttai No one prepared me. No one. Menopause overnight between chemo and tamoxifen. That said, I still have bleeding every few months so who knows where I am. #bcsm | |
Matthew Katz, MD 🟦 @subatomicdoc @DrAttai @stage4kelly @DrLaurenNye @DrSharonBober Yes, I agree. That's where I usually try to bring it up in a matter of fact way if I can #bcsm | |
Malik Shepherd Nasir @malikshepherd13 RT @SanofiUS: Chawnte Randall, who lives with metastatic breast cancer (a form of breast cancer that has spread to other organs) knows firsthand the importance of continued research and solutions for the MBC community. #BCAM #bcsm #MBCDay #StageIVNeedsMore https://t.co/ii81m0NEeW | |
Dr. Kelly Shanahan @stage4kelly @DrAttai @subatomicdoc @DrLaurenNye @DrSharonBober Are you doing the newer nerve sparing techniques yet? Not an option with I had my bmx in 2008. #bcsm | |
Leslie @Leslieks @BZavaletaMD And some partners aren’t willing to go through that process. #bcsm | |
Larissa Nekhlyudov @DrN_CancerPCP @DrSharonBober @subatomicdoc @DrLaurenNye @DrAttai @ASCO @CancerCare_ON @ASCO_pubs Yes, agree - building bridges with local resources needed all around for survivorship care! #bcsm | |
Dr. Meadow Maze Good, DO, FACOG, CPXP🥼🥋🐊🇺🇸 @MeadowGood Nothing sexier than asking, “Hey baby, will you give me my shot in the Gluteus Maximus?” #bcsm #sexy #Cancer https://t.co/xaBIzhyz3L | |
Jennifer Douglas @mmejendouglas @DrSharonBober @DrAttai @subatomicdoc @stage4kelly @DrLaurenNye I totally agree!!! #bcsm | |
Dr. Deanna Attai @DrAttai @stage4kelly @subatomicdoc @DrLaurenNye @DrSharonBober I know a few plastic surgeons across the country doing this, @drchrysopoulo may want to chime in. Still not standard practice #bcsm | |
Beverly A. Zavaleta MD @BZavaletaMD And sometimes so do partners #bcsm | |
Dennis Keim @denniskeim RT @DrSharonBober: @stage4kelly @subatomicdoc @DrLaurenNye @DrAttai This is our paper with our clinical checklist!https://t.co/hH7iKaS80Q #bcsm | |
Jennifer Douglas @mmejendouglas @MeadowGood Yeah, that can’t exactly help the mood... #bcsm | |
Sharon L Bober @DrSharonBober @stage4kelly @DrAttai @subatomicdoc @DrLaurenNye @stacylindau is one of the brilliant minds working on this problem...not there yet but hopefully one day!! #bcsm | |
Jennifer Douglas @mmejendouglas Can’t wait until more progress is made!!! #bcsm | |
Leslie @Leslieks @DrAttai @subatomicdoc @stage4kelly @DrLaurenNye @DrSharonBober No one discussed with me other than to say I wouldn’t have feeling even if they had saved my nipples. I lost my preferred go to erogenous zones, in addition to “just” losing my breasts. It’s life altering in so many ways. 😭 #bcsm | |
Sharon L Bober @DrSharonBober @Leslieks @DrAttai Absolutely!! #bcsm | |
Inspire @InspireIsHealth RT @DrN_CancerPCP: @subatomicdoc @DrLaurenNye @DrAttai @DrSharonBober See @asco endorsement of @CancerCare_ON guideline. https://t.co/xg28RK6Jvp @ASCO_pubs #bcsm | |
Jennifer Douglas @mmejendouglas @Leslieks @DrAttai @subatomicdoc @stage4kelly @DrLaurenNye @DrSharonBober So much loss we end up experiencing #bcsm | |
Dr. Kelly Shanahan @stage4kelly @DrSharonBober @DrAttai @subatomicdoc @DrLaurenNye @stacylindau And no one ever tells us that after a nipple sparing mastectomy (or even nipple reconstruction) those puppies are always “on”, so we still need a bra or cami under thinner shirts! #bcsm | |
Sharon L Bober @DrSharonBober @Leslieks @DrAttai @subatomicdoc @stage4kelly @DrLaurenNye so many women find that nipple sensation is THE go-to for being able to reach orgasm. Huge loss when that is taken away and that never gets acknowledged! #bcsm | |
Leslie @Leslieks Yes!! | |
Jennifer Douglas @mmejendouglas @stage4kelly @DrSharonBober @DrAttai @subatomicdoc @DrLaurenNye @stacylindau Oh, I had no idea about that! #bcsm | |
Leslie @Leslieks @DrSharonBober @DrAttai @subatomicdoc @stage4kelly @DrLaurenNye So much. #bcsm | |
IBC Research Fdn @IBCResearch @Leslieks @DrAttai @subatomicdoc @stage4kelly @DrLaurenNye @DrSharonBober That's why some women opt for a single mastectomy (if an option) due to the importance of the breast in their love life. Not sure some of those issues are discussed by many of the reconstructive surgeons, sadly. #bcsm | |
Sharon L Bober @DrSharonBober @Leslieks @BZavaletaMD I hear you both! In my own practice, I am often struck by how often partners really have no idea where to start or what to do...they need support as well! #bcsm | |
Dr. Deanna Attai @DrAttai #bcsm | |
Dennis Keim @denniskeim @DrAttai @DrSharonBober T4 - The only sex related issue that came up with my diagnosis was the question of using sperm banks. #bcsm | |
SPECFORD59 @SPECFORD59 @Leslieks @DrAttai @subatomicdoc @stage4kelly @DrLaurenNye @DrSharonBober I hear these complaints as a MedOnc but it’s during long term survivor follow up. Uniformly women don’t hear about this before surgery, it seems. #bcsm | |
Tambre Leighn, MA, CPC she/her @tambreleighn #bcsm #Truth | |
Matthew Katz, MD 🟦 @subatomicdoc RT @IBCResearch: @Leslieks @DrAttai @subatomicdoc @stage4kelly @DrLaurenNye @DrSharonBober That's why some women opt for a single mastectomy (if an option) due to the importance of the breast in their love life. Not sure some of those issues are discussed by many of the reconstructive surgeons, sadly. #bcsm | |
Jennifer Douglas @mmejendouglas Yes! It is so important to support partners as well. #bcsm | |
Leslie @Leslieks It’s not just our breasts. It’s not just about appearance and body image. It’s an amputation. It’s loss of feeling youthful. It’s loss of libido. Loss of erogenous zones. Loss of my hair. Loss of parts of my digestive system. Loss of life as I knew it, in every way. #bcsm | |
Sharon L Bober @DrSharonBober @SPECFORD59 @Leslieks @DrAttai @subatomicdoc @stage4kelly @DrLaurenNye When we do physician surveys (and there are lots of those) everyone says they need more training, more resources and more time. We really do have to figure out how to bring this topic into routine care...! #bcsm | |
Beverly A. Zavaleta MD @BZavaletaMD Processing #grief is a big barrier to cancer healing in many areas, including sexual health. Losing the sex life you had “before cancer” is HUGE #bcsm #bccww | |
Dr. Deanna Attai @DrAttai @denniskeim @DrSharonBober thanks for the comment, Dennis - definitely a need for more work to better understand how breast cancer treatments impact sexual health of men #bcsm | |
Matthew Katz, MD 🟦 @subatomicdoc RT @DrSharonBober: @SPECFORD59 @Leslieks @DrAttai @subatomicdoc @stage4kelly @DrLaurenNye When we do physician surveys (and there are lots of those) everyone says they need more training, more resources and more time. We really do have to figure out how to bring this topic into routine care...! #bcsm | |
Tambre Leighn, MA, CPC she/her @tambreleighn @UppityCancerP @Leslieks @DrAttai @subatomicdoc @stage4kelly @DrLaurenNye @DrSharonBober Sorry to hear about your experience @UppityCancerP Same for my husband and I - mid-30s in the process of trying to start a family and no one mentioned it once in three years. #bcsm | |
Jennifer Douglas @mmejendouglas @Leslieks Well put. It is such a traumatic process. #bcsm | |
Rebecca Alleyne, MD FACS @BeckyAlleyneMD Clinical checklist for discussing and improving women’s sexual health after a cancer diagnosis #bcsm | |
Leslie @Leslieks @IBCResearch @DrAttai @subatomicdoc @stage4kelly @DrLaurenNye @DrSharonBober Wasn’t an option in my case. Cancer on both sides. #bcsm | |
Dr. Deanna Attai @DrAttai 3 minutes to go... last thoughts! #bcsm | |
Leslie @Leslieks #bcsm Me neither. | |
Dennis Keim @denniskeim @SPECFORD59 @DrAttai @DrSharonBober As I recall, they had a deal at the local bank that let cancer patients have free use. #bcsm | |
Beverly A. Zavaleta MD @BZavaletaMD For men, I suspect the issue of erectile dysfunction due to neuropathy (from chemo) is greater than we know. #bcsm | |
Sharon L Bober @DrSharonBober @denniskeim @DrAttai Again, another way that we make so many assumptions...men struggle with so many of the same issues. I am sorry to hear this! #bcsm | |
Leslie @Leslieks @DrSharonBober @BZavaletaMD Yes! The first time we tried - he tried to touch me. I freaked out, and that was the end. #bcsm | |
Matthew Katz, MD 🟦 @subatomicdoc @DrSharonBober @SPECFORD59 @Leslieks @DrAttai @stage4kelly @DrLaurenNye There may be ways to balance the in-person education with other forms of education. It is hard to do everything in one visit, so has to be choreographed well #bcsm | |
Dr. Deanna Attai @DrAttai #bcsm | |
Tambre Leighn, MA, CPC she/her @tambreleighn @denniskeim @DrAttai @DrSharonBober Exactly. Same for us @denniskeim - and we were lucky that it was offered. Many young adults back then weren't. But we weren't offered any counseling on what to do if things didn't work out so when he passed, I faced a moral and emotional dilemma. #bcsm | |
Dr. Kelly Shanahan @stage4kelly @DrSharonBober @SPECFORD59 @Leslieks @DrAttai @subatomicdoc @DrLaurenNye Multidisciplinary approach is probably the key - oncs and gyns and NPs should partner to address sexual health issues - add in PCP, urologists for men - and therapists for everyone! Oncs don’t need to know what to do if they know where to refer. #bcsm | |
Tambre Leighn, MA, CPC she/her @tambreleighn #bcsm | |
Jennifer Douglas @mmejendouglas @DrAttai Great discussion tonight. Thanks you #bcsm community! | |
Rebecca Alleyne, MD FACS @BeckyAlleyneMD Normalize discussing sexual health w cancer patients | |
Leslie @Leslieks Oops #bcsm | |
Dr. Deanna Attai @DrAttai Thank you to @DrSharonBober for joining us tonight to discuss sexual heath after breast cancer treatment - and thank you all for your questions and comments! Stay safe, everyone! #bcsm | |
Leslie @Leslieks @mmejendouglas Yep. I have a good therapist. #bcsm | |
Dr. Kelly Shanahan @stage4kelly @Leslieks @SPECFORD59 @DrAttai @subatomicdoc @DrLaurenNye @DrSharonBober ASCO guidelines indicate low dose vaginal estrogen is likely safe even in HR+ cancers and should be discussed. #bcsm | |
Beverly A. Zavaleta MD @BZavaletaMD Many thanks all! 💕 #bcsm | |
Sharon L Bober @DrSharonBober @Leslieks Its ok to acknowledge the grief and loss. That is so real and such a real part of the whole story. I hear you loud and clear. #bcsm | |
Dennis Keim @denniskeim @BZavaletaMD Good to know. One of the problems is that the mean age for men getting breast cancer is something like 68. Stuff starts happening there anyhow. #bcsm | |
Thanks Cancer! @ThanksCancer RT @BZavaletaMD: Processing #grief is a big barrier to cancer healing in many areas, including sexual health. Losing the sex life you had “before cancer” is HUGE #bcsm #bccww | |
Larissa Nekhlyudov @DrN_CancerPCP @DrSharonBober - lots of surveys done, lots of available resources...time to bring sexual health awareness into routine cancer care! #survonc #bcsm 👇 | |
Dr. Kelly Shanahan @stage4kelly ‘Night all #bcsm | |
Leslie @Leslieks @DrSharonBober @BZavaletaMD Well, we’re still at zero. #bcsm | |
Dennis Keim @denniskeim Have a great week, everyone! #bcsm | |
Thanks Cancer! @ThanksCancer RT @DrSharonBober: @DrLaurenNye @DrAttai For sure. Every week I meet with women who are struggling with low libido but no one has helped them manage discomfort and pain with and without sexual activity. No one has desire when sex hurts and its crazy that we don't give everyone education about vaginal health #bcsm | |
Leslie @Leslieks @DrSharonBober @stage4kelly @SPECFORD59 @DrAttai @subatomicdoc @DrLaurenNye I don’t know how to get comfortable with this. My onc does not recommend. #bcsm | |
Lauren Nye @DrLaurenNye @Leslieks @SPECFORD59 @DrAttai @subatomicdoc @stage4kelly @DrSharonBober I’ve recommended the Meet Rosy app to patients after we have made sure they have had a good exam (I work with great gynecologists 🙌🏻!) and while we manage any physical barriers. We are also lucky to have a sexual health psychologist locally #bcsm | |
Jennifer Douglas @mmejendouglas @denniskeim You too! #bcsm | |
Janice Cowden @JaniceTNBCmets No doubt it’s one reason why we see so many broken relationships after diagnosis & treatment. Loss of self, loss of sexual function & health, lack of effective communication, lack of helpful resources, all leading to loss of relationships. So much loss... #bcsm | |
Heidi✨ @Heidianns612 RT @DrSharonBober: @DrLaurenNye @DrAttai For sure. Every week I meet with women who are struggling with low libido but no one has helped them manage discomfort and pain with and without sexual activity. No one has desire when sex hurts and its crazy that we don't give everyone education about vaginal health #bcsm | |
Leslie @Leslieks @DrSharonBober @stage4kelly @SPECFORD59 @DrAttai @subatomicdoc @DrLaurenNye And does that change libido or just moisture level and muscle tone? #bcsm | |
Sharon L Bober @DrSharonBober @DrAttai LETS GET LOUD! I think there are tons of opportunities to partner together to advocate for funding from major funders to go for sexual health research! #bcsm | |
Tambre Leighn, MA, CPC she/her @tambreleighn #bcsm Thank you @DrSharonBober and @DrAttai for bringing attention to the top of sexual health after #cancer treatment. Night all! | |
Jennifer Douglas @mmejendouglas I love this! #bcsm | |
Sharon L Bober @DrSharonBober @DrAttai Thank you for having me!! Honored to be with you tonight! #bcsm | |
Leslie @Leslieks @DrLaurenNye @SPECFORD59 @DrAttai @subatomicdoc @stage4kelly @DrSharonBober Googles app #bcsm | |
Beverly A. Zavaleta MD @BZavaletaMD RT @JaniceTNBCmets: No doubt it’s one reason why we see so many broken relationships after diagnosis & treatment. Loss of self, loss of sexual function & health, lack of effective communication, lack of helpful resources, all leading to loss of relationships. So much loss... #bcsm | |
Thanks Cancer! @ThanksCancer RT @mmejendouglas: Yes! It is so important to support partners as well. #bcsm | |
Dr. Donna Charlevoix 🌻 @dcharlevo #bcsm Thanks for insightful convo. 'night! | |
Janie H. @JanieH47560980 I would think about this especially agree most people having an rough time of this disease B. Cancer is an scariest thing to an person life. | |
Leslie @Leslieks @DrSharonBober @DrAttai Thanks so much! #bcsm | |
IBC Research Fdn @IBCResearch Good night & thanks all for the insightful conversation & resources. Don't forget to change your clocks (most of us) even if you don't want an extra hour of 2020! See ya next week! #bcsm | |
Abigail Johnston, Esq (she/her) @AMJohnston1315 RT @LivingBeyondBC: "My story isn’t pink and doesn’t come with ribbons or awareness.” Chris Corrigan reflects on #BreastCancerAwarenessMonth and the release of her memoir Again: Surviving Cancer Twice with Love and Lists: https://t.co/qf6GVGd24u #bcsm https://t.co/rbQyfvwdjv | |
Dennis Keim @denniskeim @tambreleighn @DrAttai @DrSharonBober I'm so sorry to hear about the lack of professional support, Tambre. Such an awful situation to have to deal with on your own. Good thoughts to you as always. #bcsm | |
SPECFORD59 @SPECFORD59 @Leslieks @DrSharonBober @stage4kelly @DrAttai @subatomicdoc @DrLaurenNye It is quality of life issue, we treat to extend both quantity and “quality” of life. All of us balance risk benefit. In this there is benefit with little “proven” risk. #bcsm | |
Abigail Johnston, Esq (she/her) @AMJohnston1315 RT @AdvBreastCa_HU: What does being remarried with metastatic look like? https://t.co/wqdIth7VhE #bcsm #mbclife #livingwithmbc | |
Pilgrim125 @Pilgrim125 Sometimes I’m just tired of being an outlier and tired of being a support to so many who aren’t and then feeling guilty that I feel that way.. #BCSM #MoreforMBC #ClosedMetastaticBreastCancerSupportGroup | |
Ian Pereira @IanJPereira @subatomicdoc @DrLaurenNye @DrAttai @DrSharonBober I did come across some communication guidance by @drdonsdizon et al for discussing #SexualHealth issues: https://t.co/LEjNHHXf5E #bcsm T2 1/2 https://t.co/0cQ8017dCb | |
IBC Research Fdn @IBCResearch RT @LivingBeyondBC: "My story isn’t pink and doesn’t come with ribbons or awareness.” Chris Corrigan reflects on #BreastCancerAwarenessMonth and the release of her memoir Again: Surviving Cancer Twice with Love and Lists: https://t.co/qf6GVGd24u #bcsm https://t.co/rbQyfvwdjv | |
Juan Carlos Pozo Parilli @pozoparilli RT @NCIprevention: The following have little or no effect on your risk of breast cancer: Having an abortion Making diet changes Taking vitamins Cigarette smoking Using underarm deodorant or antiperspirant Taking statins Working night shifts Here is what we know: https://t.co/q91FsfR68p #bcsm https://t.co/LXFBbUfP8w | |
Kathy Gori @kathygori I think I missed the end of tonight’s discussion, I sat down and fell asleep! Goodnight everyone stay safe and sane during the run-up to next week #bcsm | |
Hesham Elhalawani @HElhalawaniMD #bcsm #ASTRO20 @ASTRO_org #radonc | |
Hesham Elhalawani @HElhalawaniMD RT @DrN_CancerPCP: Updated Breast Cancer Surveillance Recommendations for Female Survivors of Childhood, Adolescent, and Young Adult Cancer From the International Guideline Harmonization Group #ayacsm #survonc https://t.co/jDt7F0FV5w | |
Ian Pereira @IanJPereira @DrSharonBober @DrN_CancerPCP @subatomicdoc @DrLaurenNye @DrAttai @ASCO @CancerCare_ON @ASCO_pubs Interesting point....most guides (CCO, ASCO, ESMO/ESO BCY) & presentations I've noticed on the topic recommend discussing #SexualHealth issues routinely. Not sure how often it's actually done and the barriers - incl cultural #bcsm c @lbarbera123 @drdonsdizon @EK_Drake @DrAnneKatz | |
Ian Pereira @IanJPereira @DrSharonBober @DrN_CancerPCP @subatomicdoc @DrLaurenNye @DrAttai @ASCO @CancerCare_ON @ASCO_pubs @lbarbera123 @drdonsdizon @EK_Drake @DrAnneKatz In modern #MedEd #CulturalCompetencies seem more ingrained (i.e. in #CanMeds2015 - communicator, collaborator, advocator, and other roles), but curious how much includes #SexualHealth and if/how it is taught. May be a ground up touch point. #bcsm 2/2 | |
Mary L Gorden @marylgorden RT @LivingBeyondBC: "My story isn’t pink and doesn’t come with ribbons or awareness.” Chris Corrigan reflects on #BreastCancerAwarenessMonth and the release of her memoir Again: Surviving Cancer Twice with Love and Lists: https://t.co/qf6GVGd24u #bcsm https://t.co/rbQyfvwdjv | |
sugarciare @sugarciare Gene expression signatures that predict pCR and survival in CALGB40601 clinical trial. Important for future escalation and de-escalation treatment strategies in HER2+ breast cancer. Congratulations to @AranzazuFM and the rest of the team! | |
Tisha Felder, PhD, MSW @DrTishaFelder You don’t want to miss hearing from these AMAZING patient experts about their experiences!!! Especially encouraging health professionals to attend and learn ways to improve how you care for your patients! #bcsm #MedTwitter #NurseTwitter #socialwork #blacktwitter |
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