#BCSM Transcript
Healthcare social media transcript of the #BCSM hashtag.
– ().
See #BCSM Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Terri Coutee @6state RT @MedscapeOnc: Invasive #breastcancer mortality risk is higher in women with #diabetes and elevated fructosamine levels. Read more on this association in our clinical tool. https://t.co/RlbR5aIe7x #bcsm https://t.co/5P4z0FCkZi |
 | Dr. Deanna Attai @DrAttai I'm Deanna Attai, breast surgeon in LA, moderating tonight #bcsm |
 | Sandra Spivey @SpiveySandra Hello from the OC #bcsm |
| Dr. Deanna Attai @DrAttai Please take a few minutes to introduce yourselves! @stales isn't with us tonight so I might not get to say hello to everyone... #bcsm |
| Dr. Deanna Attai @DrAttai @SusanRuddick1 hi @SusanRuddick1 thanks for joining! #bcsm |
| Dr. Deanna Attai @DrAttai @SpiveySandra hi @SpiveySandra glad you could make it! #bcsm |
 | Liza B @itsthebunk @DrAttai @NinezPonce @UCLAchpr Looks like a great chat topic for tonight's #bcsm. I am waving hi and sadly, goodbye, as I am not able to join. Looking forward to the transcript. Have a great chat everyone! :) |
 | Lisa Hagen @lisa_hagen22 Joining from Canada #bcsm |
 | Inspire @InspireIsHealth Hello to the #bcsm community, John Novack here from Inspire. |
| Dr. Deanna Attai @DrAttai @lisa_hagen22 Hello Lisa! #bcsm |
 | Spannerinmyworks @SpannerInMe Joining from Dallas Texas #bcsm |
| Dr. Deanna Attai @DrAttai New to a tweet chat? Here's some info: https://t.co/3edMkx5lEg #bcsm |
 | Ninez Ponce @NinezPonce Hello everyone! UCLA team is on the chat and so thankful to you all for being here. #bcsm |
 | Jamie Holloway, PhD @jamienholloway Hi #bcsm friends. Jamie in the DC area. 7 years NED after early stage TNBC. Advocate and scientist. |
| Dr. Deanna Attai @DrAttai @NinezPonce Hello Ninez! Thanks to you and the @UCLAchpr team for joining tonight! #bcsm |
 | 𝙅𝙚𝙨𝙪𝙨 𝘼𝙣𝙖𝙢𝙥𝙖 𝙈.𝘿, 𝙈.𝙎🧬🔬 @jesusanampa RT @NicoleKuderer: #OncoAlert Ever more evidence that TILS are prognostic in #bcsm also for chemotherapy: #OncoAlert Ever more evidence that TILS are prognostic in #bcsm also for chemotherapy: Also a 44-gene DNA damage immune response signature has been suggested to be prognostic (although may not be independently so vs other prognostic factors). |
| Dr. Deanna Attai @DrAttai @SpannerInMe welcome! #bcsm |
 | Lisa Gualtieri @lisagualtieri Jumping in to say hi to 2 of my favorite people: @stales and @DrAttai. Have a great #bcsm today! |
| Dr. Deanna Attai @DrAttai @jamienholloway hi Jamie - thanks for joining! #bcsm |
| Dr. Deanna Attai @DrAttai @LoriAdelson2 @BeLikeLight Hello Lori - glad you could join tonight! #bcsm |
 | Dennis Keim @denniskeim Howdy #bcsm. Dxed in 2013 with Stage 1. Mastectomy, 6x TC chemo and now Tamoxifen. Still NED in NE. #bcsm |
| Dr. Deanna Attai @DrAttai @denniskeim hello Dennis! #bcsm |
| Dr. Deanna Attai @DrAttai Some background on tonights chat - @NinezPonce and her team at @UCLAchpr have a grant from @CABreastCancer to study barriers to care in its w/metastatic breast cancer - with a focus on actionable change #bcsm |
| Ninez Ponce @NinezPonce @DrAttai @UCLAchpr Thanks so much @DrAttai for hosting this conversation #bcsm. |
| Dr. Deanna Attai @DrAttai @NinezPonce @UCLAchpr @CABreastCancer tonight the research team wants to learn from this amazing group - and as part of the study, tweets (but not names / ID) will be used. So if you'd rather not participate we understand #bcsm |
 | Dr_Dana @Dr_Dana Hello from Little Rock. Breast surgeon listening and learning. Saying bye to my little panda Bei Bei is hard :( #bcsm |
| Dr. Deanna Attai @DrAttai @Dr_Dana thanks for joining - the little one will be back soon, right? #bcsm |
| Dr. Deanna Attai @DrAttai we'll get started with T1 in a minute - we'd like to hear from everyone, but especially those who are living with #metastaticbreastcancer because we all know #StageIVneedsmore #bcsm |
| Dr. Deanna Attai @DrAttai @NinezPonce @UCLAchpr thanks so much for joining! #bcsm |
| Dennis Keim @denniskeim Just got back from my pharmacy run to CVS. Got to tell the pharmacist about the mummy Halloween joke. #bcsm |
| Sandra Spivey @SpiveySandra Living with MBC since 1998 #bcsm |
| Dennis Keim @denniskeim The joke where the mummy is actually going to a party as a CVS receipt. I think she'd already heard it. :) #bcsm |
| Dr. Deanna Attai @DrAttai @denniskeim I would think so - I imagine there are multiple CVS receipt jokes #bcsm |
 | Kathy Gori @kathygori Hey there all....sorry to miss tonight, laying low trying to relax #bcsm |
| Dr. Deanna Attai @DrAttai @SpiveySandra thanks so much for joining - please chime in with your thoughts #bcsm |
| Sandra Spivey @SpiveySandra t1 one big issue is agreeing on next line of therapy when it’s chemo esp when onc insists on giving maximum dose. Just spoke to helpline caller today & she was freaking out about being able to have QOL with new tx suggested. Need Pt centered dosing #bcsm |
 | DSP--💙🐦🟦✡️ @drawstickpeople @DrAttai Thanks for doing this, Dr Attai. Just listening from LA #bcsm |
| Dennis Keim @denniskeim @kathygori Hang in there, Kathy. Hugs. #bcsm |
| Dr. Deanna Attai @DrAttai @drawstickpeople thanks for listening but feel free to chime in if you want to contribute! #bcsm |
| Dr. Deanna Attai @DrAttai @kathygori hi Kathy - thanks for checking in #bcsm |
| Dr_Dana @Dr_Dana @DrAttai https://t.co/1DTa2pegRg to China to breed eventually. No more little ones for now. #bcsm |
| Dr. Deanna Attai @DrAttai RT @SpiveySandra: t1 one big issue is agreeing on next line of therapy when it’s chemo esp when onc insists on giving maximum dose. Just spoke to helpline caller today & she was freaking out about being able to have QOL with new tx suggested. Need Pt centered dosing #bcsm |
 | Randy C. Miles MD, MPH, FSBI @RMilesMD RT @DrAttai: we'll get started with T1 in a minute - we'd like to hear from everyone, but especially those who are living with #metastaticbreastcancer because we all know #StageIVneedsmore #bcsm |
| Dr. Deanna Attai @DrAttai @SpiveySandra T1 I can imaging not that helpful when helpline person is freaking out #bcsm |
| Dr. Deanna Attai @DrAttai T1 are there other communication issues that are common? #bcsm |
| Sandra Spivey @SpiveySandra T1 (cont) MBC is not treated under a curative manner like early stage. Goal is to extend length and QOL. Lower doses have been shown to be effective. So why throw an atomic bomb at an MBC pt who obviously won’t tolerate it? #bcsm |
 | Beth Boyd @bboydRN RT @Breast360: What a fantastic Lighting Your Path #breastcancer support event we had yesterday! We will be posting key takeaways from the presentations here this week. Stay tuned... #bcsm #bccww https://t.co/YqJz5NH1zF |
| Sandra Spivey @SpiveySandra T1- MBC pts often try to@look as good as possible at their onc appts and may not report QOL issues unless onc asks. Some don’t ask #bcsm |
| Dr. Deanna Attai @DrAttai @SpiveySandra T1 do you think pts don't report QOL because they're worried about treatment changes if they report side effects? #bcsm |
| Dr. Deanna Attai @DrAttai @T_Allen1998 thanks for stopping by - what an amazing group of patient advocates! #abclisbon looked like an amazing experience #bcsm |
| Dr. Deanna Attai @DrAttai @rivereac hello Erika - thanks for joining! #bcsm |
| Dr. Deanna Attai @DrAttai @kim_builta hi Kim - welcome! #bcsm |
 | Gary L. Thompson @garyleethompson Checking in from Austin, TX... way better weather this week than last when we had dropped from 72 to 33 and mixed frozen stuff!! #bcsm |
| Dr. Deanna Attai @DrAttai T1 - what are the communication barriers (w/doc, insurance, pharmacy) faced by patients w/metastatic breast cancer #bcsm |
| Sandra Spivey @SpiveySandra Ppl presenting with unusual symptoms that end up being dx’d as MBC are often missed & dismissed prolonging time to treatment. “If the doc hasn’t seen it before, it doesn’t exist” (Eg young age, etc) #bcsm |
| Dr. Deanna Attai @DrAttai T2 what are the palliative care barriers faced by those w/metastatic breast cancer? I heard earlier from pt on clinical trial, couldn't keep palliative care team #bcsm |
| Inspire @InspireIsHealth RT @DrAttai: T2 what are the palliative care barriers faced by those w/metastatic breast cancer? I heard earlier from pt on clinical trial, couldn't keep palliative care team #bcsm |
| Sandra Spivey @SpiveySandra @SusanRuddick1 @DrAttai #bcsm QOL - quality of life |
| Dr. Deanna Attai @DrAttai @garyleethompson Hello Gary! We're discussing barriers to care in pts w/metastatic breast cancer, with the @UCLAchpr team, with an eye on policy change - feel free to chime in with your experiences #bcsm |
| Dr. Deanna Attai @DrAttai @SusanRuddick1 @SpiveySandra Thanks for asking - PLEASE if someone doesn't understand a question or abbreviation, ask!! QOL = Quality of Life #bcsm |
| Gary L. Thompson @garyleethompson @DrAttai @UCLAchpr Thanks for quickly getting me into the loop... Thanks @UCLAchpr My wife passed of #mbc on 10.21.2014 #bcsm |
 | Uppity Cancer Pt @UppityCancerP @DrAttai @garyleethompson @UCLAchpr What policy changes are being discussed? #bcsm |
| Sandra Spivey @SpiveySandra @DrAttai Some don’t. They want to stay on tx because it’s a known therapy. But sometimes they don’t realize doses can be reduced to ease SEs #bcsm |
| Dr. Deanna Attai @DrAttai @UppityCancerP @garyleethompson @UCLAchpr we haven't gotten there yet but will be discussing ideas - the @UCLAchpr team is looking for any suggestions! https://t.co/g5xl0tkJVe #bcsm |
| Uppity Cancer Pt @UppityCancerP @DrAttai @garyleethompson @UCLAchpr And if you need access to #metastaticbreastcancer patients, got a survey, we will disseminate like nobody's business. #bcsm |
| Dr. Deanna Attai @DrAttai @UppityCancerP @garyleethompson @UCLAchpr might just take you up on that! #bcsm |
| Sandra Spivey @SpiveySandra @DrAttai T1 #Bcsm - what about insurance pre-approvals for routine scans and being rejected? That is a real anxiety builder for MBC pts who are vulnerable because they don’t know if they’ve had progression. Sleepless nights |
| Dr. Deanna Attai @DrAttai @LoriAdelson2 @SpiveySandra no problem! I've forgotten the hashtag many a time #bcsm |
 | Lori Adelson @LoriAdelson2 @DrAttai @SpiveySandra Whew #bcsm |
| Gary L. Thompson @garyleethompson @DrAttai T1: As I reflect back on the "chaos" of #metastatic #breastcancer faced by #theloveofmylife obviously, I think about Maureen and her pain first. But that same "chaos" is external... docs, insurance, pharmacy, etc. #bcsm |
| Lisa Hagen @lisa_hagen22 @DrAttai #bcsm I have family members who have been diagnosed with early stage breast cancer and they were unaware that ~20-30% of early early stage breast cancers will become MBC. I think this may be a communication gap to patients |
| Ninez Ponce @NinezPonce @SpiveySandra @DrAttai That's exactly the type of input we need to hear to formulate policy changes. Thank you! #bcsm |
| Dr. Deanna Attai @DrAttai @SpiveySandra this is huge - especially if tumor markers increasing, you know something going on, but can't get the scan authorized #bcsm |
| Sandra Spivey @SpiveySandra @DrAttai T2 My plan’s Palliative Care Team is still figuring out what they do for a living. Right now focus is mainly advanced directives and pain meds. Should get better but not yet. #bcsm |
 | Susan Rahn @Stickit2Stage4 A hospital or cancer center having onsite palliative care or ability to have access to Palliative Care is a huge issue for countless patients. Many are referred to pain clinics which are NOT the same at all. There is an alarming shortage of/access to Palliative Care |
 | forthebreastofus @thebreastofus Checking in from Seattle, WA and Jacksonville, FL. For the Breast of Us is the first online community for women of color affected by #breastcancer founded by 2 #BreastCancerBaddies @marissadt28 @BraveBeauty26 Hello Everyone👋🏽 #BCSM https://t.co/nFDo1lR2ch |
| Dr. Deanna Attai @DrAttai @lisa_hagen22 yes - we discuss this all the time. Part of it is we focus on "cure" w/early stage and docs don't always bring up the possibility of mets #bcsm |
| Dr. Deanna Attai @DrAttai @thebreastofus @marissadt28 @BraveBeauty26 hello and thanks for checking in! Discussing barriers to care in pts w/metastatic breast cancer, feel free to chime in! #bcsm |
| Dr. Deanna Attai @DrAttai #bcsm |
| Ninez Ponce @NinezPonce RT @thebreastofus: Checking in from Seattle, WA and Jacksonville, FL. For the Breast of Us is the first online community for women of color affected by #breastcancer founded by 2 #BreastCancerBaddies @marissadt28 @BraveBeauty26 Hello Everyone👋🏽 #BCSM https://t.co/nFDo1lR2ch |
| Sandra Spivey @SpiveySandra T3 - surprise co pays for new therapies once the line of therapy is established. Then scrambling for payment assistance when already stressed by progression #bcsm |
| Dr. Deanna Attai @DrAttai #bcsm recap so far T1 communication barriers T2 palliative care barriers T3 financial barriers Keep those thoughts and ideas and issues coming! |
| Dr. Deanna Attai @DrAttai #bcsm |
| Susan Rahn @Stickit2Stage4 Yes Also, denials from insurance companies for meds/treatments that have been proven standard of care & deemed necessary by patients oncologist. Fear of step therapy. Fear of FDA limiting access to needed/necessary drugs to function and have decent QOL |
| Gary L. Thompson @garyleethompson @DrAttai @SpiveySandra We need all of the processes, tools, therapies, appointments to move as fast, if not faster, than the #metastatic #breastcancer itself #bcsm |
| Dr. Deanna Attai @DrAttai @SusanRuddick1 @SpiveySandra once approved, still need to schedule. Unfortunately not as quick and speedy a process as desired #bcsm |
| Dr. Deanna Attai @DrAttai #bcsm |
 | Susan Ruddick @SusanRuddick1 @DrAttai Oops #bcsm |
| Dr. Deanna Attai @DrAttai @Stickit2Stage4 thanks for joining, don't forget the hashtag :) #bcsm |
| Dr. Deanna Attai @DrAttai you all are keeping me on my toes tonight! #bcsm |
 | Candy Apples @Ms_CandyApples RT @Stickit2Stage4: Yes Also, denials from insurance companies for meds/treatments that have been proven standard of care & deemed necessary by patients oncologist. Fear of step therapy. Fear of FDA limiting access to needed/necessary drugs to function and have decent QOL |
| Susan Ruddick @SusanRuddick1 @DrAttai @SpiveySandra Not always very quick here 🇨🇦 either although care is good once you are in the system. #bcsm |
| Sandra Spivey @SpiveySandra T1 - there are misunderstandings in terminology. Onc says “Your MBC is stable” and pt hears “your tumors aren’t shrinking. Bad news!” #bcsm |
| Terri Coutee @6state @DrAttai Checking in from the cold #PacificNW in Seattle #PatientAdvocate in #BreastReconstruction and two-time survivor #bcsm |
| Dr. Deanna Attai @DrAttai RT @SpiveySandra: T1 - there are misunderstandings in terminology. Onc says “Your MBC is stable” and pt hears “your tumors aren’t shrinking. Bad news!” #bcsm |
| Dr. Deanna Attai @DrAttai @SpiveySandra oh this is a good teaching point for the docs, that's for sure #wordsmatter #bcsm |
 | Susan Burke Mangano @susila55 RT @VirginiaMByrne: We all need more joy in our lives! #lcsm #lcam #bcsm |
 | Dr Nitin Malekar @MalekarDr RT @BreastAdvocate: Pakistan has the highest rates of #BreastCancer in Asia. Early detection is essential for treatment but medical experts fear many women are not coming forward due to a culture of modesty. #bcsm https://t.co/Ql3QRN7Bgw |
| Lisa Hagen @lisa_hagen22 @DrAttai #bcsm Agreed. It is so important to let patients know that they need to be aware of disease progression and that there are symptoms they should be cognizant of |
| Dr. Deanna Attai @DrAttai RT @garyleethompson: @DrAttai @SpiveySandra We need all of the processes, tools, therapies, appointments to move as fast, if not faster, than the #metastatic #breastcancer itself #bcsm |
 | Beverly A. Zavaleta MD @BZavaletaMD RT @BreastAdvocate: #Cancer is a tremendous burden on anyone. But for a growing number of lower-income and even middle-class patients, a diagnosis leads to an avalanche of trouble. #bcsm https://t.co/9wJDbxieYN |
| Sandra Spivey @SpiveySandra T4 - big barrier to getting disability is the pt doesn’t know the process of applying $ if employed, small companies don’t know what to do. #bcsm |
| Dr. Deanna Attai @DrAttai @UppityCancerP full time job, that's for sure, thanks for joining and sharing your thoughts and experiences tonight #bcsm |
| Dr. Deanna Attai @DrAttai T4 re disability I've also seen some tweets from patients that if they apply for medication financial assistance program that can limit their disability... doesn't seem right #bcsm |
| Terri Coutee @6state @lisa_hagen22 @DrAttai Very true but how do you judge when "too much information" is not what the patient wants.Tough call on that one #bcsm |
| Sandra Spivey @SpiveySandra T4 #bcsm There are lots of people who are contract workers (esp in high tech). They don’t have disability insurance as aren’t aware of state disability. #bcsm |
| Dr. Deanna Attai @DrAttai @NinezPonce thanks, I saw it discussed previously #bcsm |
| Uppity Cancer Pt @UppityCancerP @DrAttai Really, the doc should be researching this, but they are often overburdened. I shouldn't have to prove to doc that, yes, being on a conjugate several years can lead to allergic reactions. Took me a bit to find that via PubMed. #bcsm |
| Beverly A. Zavaleta MD @BZavaletaMD @DrAttai Joining late, Texas. I’m a doc and a patient, Stage 2 2015, currently NED. I have been on and off disability, complete and partial at times. Hard to meet criteria, especially when reason is combo of disabilities/problems. #bcsm |
| Gary L. Thompson @garyleethompson @DrAttai Doing a great job! @staley would be impressed... ;-) #bcsm |
| Sandra Spivey @SpiveySandra @6state @lisa_hagen22 @DrAttai #BCsm Onc needs to verify - ask what the patient understands - to find out if the patient is able to listen and process info. I spend time w MBC helpline callers making sense of what caller thought they heard from onc |
 | Hillary (Stires) Andrews, PhD @HillStirSci RT @SpiveySandra: T1 (cont) MBC is not treated under a curative manner like early stage. Goal is to extend length and QOL. Lower doses have been shown to be effective. So why throw an atomic bomb at an MBC pt who obviously won’t tolerate it? #bcsm |
| Lisa Hagen @lisa_hagen22 @6state @DrAttai #bcsm You are so correct. Patients are so varied in the amount of information that they want so it is not straightforward. |
| DSP--💙🐦🟦✡️ @drawstickpeople @DrAttai @SpiveySandra Emerging from listening mode. Words do matter & need to be operationally defined & translated from med-speak to pt-speak With many chronic med conditions, "stable" & "no change" are good/great 📰 , yet freq misinterpreted by pts asking the pt what they heard helps #bcsm |
| Terri Coutee @6state RT @SpiveySandra: @6state @lisa_hagen22 @DrAttai #BCsm Onc needs to verify - ask what the patient understands - to find out if the patient is able to listen and process info. I spend time w MBC helpline callers making sense of what caller thought they heard from onc |
| Dr. Deanna Attai @DrAttai @UppityCancerP agree with you. But patients do need to become experts in their own disease, lean on experienced advocates to help so that important issues and concerns get addressed #bcsm |
| Dr. Deanna Attai @DrAttai @BZavaletaMD thanks for joining Beverly and for your thoughts - you have a unique perspective that's for sure #bcsm |
| forthebreastofus @thebreastofus Cost of meds for sure and access to care. Healthcare teams could probably do a better job of finding resources for pts and making sure they are aware of possible grants, manufacture coupons etc #BCSM |
| Dr. Deanna Attai @DrAttai @Brooksx2 hello - thanks for stopping by! #bcsm |
| Dr. Deanna Attai @DrAttai RT @drawstickpeople: @DrAttai @SpiveySandra Emerging from listening mode. Words do matter & need to be operationally defined & translated from med-speak to pt-speak With many chronic med conditions, "stable" & "no change" are good/great 📰 , yet freq misinterpreted by pts asking the pt what they heard helps #bcsm |
| Dr. Deanna Attai @DrAttai #bcsm |
| Beverly A. Zavaleta MD @BZavaletaMD @DrAttai @UppityCancerP Are there any advocates that work remotely? We have none in my area. #bcsm |
| Sandra Spivey @SpiveySandra T1 - big communication issue is communication style - pt usually has a preference for how detailed they want their onc to be. Need to discuss this up front. Otherwise pt often seeks new onc. #bcsm |
| Dr. Deanna Attai @DrAttai @LoriAdelson2 @SpiveySandra @ElissaSlotkin wow - that's incredible and horrible all at the same time #bcsm |
| Beverly A. Zavaleta MD @BZavaletaMD @UppityCancerP @DrAttai Yes it’s a full time job to stay healthy (as much as possible) with cancer #bcsm |
| Dennis Keim @denniskeim @SpiveySandra So many young ones that get incorrectly diagnosed. "Too young to have breast cancer." One of my dearest friends had that happen to her in the 1980s. #bcsm |
 | Enlightening Results 💡 @GraceCordovano @DrAttai Just had two major hospital systems in my local area both lose their top #PalliativeCare experts. Devastating loss to the patient communities. We need more than 1 expert at a hospital to serve all patients. #bcsm |
| Hillary (Stires) Andrews, PhD @HillStirSci Hi everyone, stopping in late but catching up on this important convo! #bcsm |
| Dr. Deanna Attai @DrAttai @GraceCordovano and I wonder how much of a priority it is for the hospitals to put another #PallOnc team in place? #bcsm |
| Sandra Spivey @SpiveySandra T5 - besides patient centered dosing, we need to make it easier to be in clinical trials without requiring expensive travel costs to pts. We limit who can be in a trial by pts who are unable to pay for travel. #bcsm |
 | april knowles @akknowles1 @DrAttai @UppityCancerP Some patients can’t read, we don’t need to be experts in our disease. #bcsm |
| Dr. Deanna Attai @DrAttai @HillStirSci Hi Hillary! Thanks for joining! #bcsm T5 is thoughts on policy changes to improve the care for patients with #metastaticbreastcancer |
| forthebreastofus @thebreastofus @SpiveySandra @6state @lisa_hagen22 @DrAttai Agreed! There’s so much information for one to process. Maybe having someone from the care team following up with the patient a few days later would be helpful #BCSM |
| Dr. Deanna Attai @DrAttai @akknowles1 @UppityCancerP I meant that patients often feel they need to become experts in their own disease - I agree that they shouldn't have to #bcsm |
| april knowles @akknowles1 @DrAttai Everyone outside a major cancer center and lots at one. #bcsm |
 | Roberta A Albany @raalbany RT @stales: Tonight on #BCSM - @DrAttai and guests @NinezPonce and @UCLAchpr will discuss barriers to care for patients with #metastaticbreastcancer #MBC, with a focus on creating policy changes - join us at 9 PM ET/6 PM PT https://t.co/rolapTusHT |
| Lori Adelson @LoriAdelson2 @DrAttai @SpiveySandra @ElissaSlotkin But if her mom could see the work she is doing now she would be bursting w pride #bcsm. Ok I’ll shut up again ...but it was so scary when she had NO insurance, zippo. I really want single payer or some better plan |
| Dr. Deanna Attai @DrAttai @akknowles1 yes - what I've heard from others that there are not nearly enough #PalliativeCare teams, and the ones in place are under-utilized #bcsm |
| Enlightening Results 💡 @GraceCordovano @DrAttai I still can’t understand why there isn’t a team in place? A single #PalliativeCare dr at 2 major hospitals? Patients feel abandoned & sad for the one part of treatment that was working & they could rely on. 😞 #bcsm |
| Sandra Spivey @SpiveySandra T5 - we need MBC pts to undergo retesting for receptor status & genetic changes upon progression, esp when pt was on a therapy for a good amount of time. If we don’t, next therapy line may be totally ineffective. #bcsm |
| Beverly A. Zavaleta MD @BZavaletaMD @UppityCancerP @akknowles1 @DrAttai At some hospitals the medical #librarian does this literature review job. My mom used to do this. At Univ. St. Louis. #bcsm |
| Beverly A. Zavaleta MD @BZavaletaMD @kim_builta Would love for insurance companies to let physicians make the decisions and butt out!!! #bcsm |
| Dr. Deanna Attai @DrAttai @akknowles1 @UppityCancerP what I mostly see is patients reaching out to the advocates here on twitter - @SpiveySandra @stage4kelly @itsnot_pink @christeeny513 just to name a few #bcsm |
| DSP--💙🐦🟦✡️ @drawstickpeople @SpiveySandra T3: to make matters worse/more frustrating--for treatment meds taken at home... Many private insurers change their formulary lists twice/year (Anthem BC is one example) & MD offices often can't keep up with those changes & pts find out after the fact #bcsm #bcsm |
| Dennis Keim @denniskeim @akknowles1 @DrAttai @UppityCancerP I utilized my friends and family network. Lots of great knowledgeable support. #bcsm |
| forthebreastofus @thebreastofus RT @outcomes4me: Male breast cancer is rare but real: Male breast cancer is rare but real: 1 in 833 men will be diagnosed with breast cancer. At #Outcomes4Me, we know that #menhavebreaststoo. If you have male breast cancer or know someone who does, and you want to help, please reach out to breastcancer@outcomes4me.com. #bcsm #mbc |
| Dennis Keim @denniskeim @akknowles1 @DrAttai @UppityCancerP I also had access to a local breast cancer nurse navigator who was a great help. #bcsm |
| Sandra Spivey @SpiveySandra @DrAttai @akknowles1 @UppityCancerP @stage4kelly @itsnot_pink @christeeny513 Always happy to help anyone living with MBC #bcsm |
 | Jen Buhay, PhD 💙 @JenBuhayPhD RT @SpiveySandra: T5 - we need MBC pts to undergo retesting for receptor status & genetic changes upon progression, esp when pt was on a therapy for a good amount of time. If we don’t, next therapy line may be totally ineffective. #bcsm |
| Dr. Deanna Attai @DrAttai Wow only 2 minutes left - you all have (as usual) been amazing at sharing your thoughts and experiences. Keep the convo about #MBC going! The @UCLAchpr team led by @NinezPonce want to hear from you! Research team email is linked in the blog post: https://t.co/g5xl0tkJVe #bcsm |
| Ninez Ponce @NinezPonce Thank you! We appreciate your time, effort and ideas on how policies and systems can do better for treating MBC! #bcsm |
| forthebreastofus @thebreastofus This!! And please stop telling women “you’re too young” breast cancer doesn’t discriminate and just because you haven’t seen it, doesn’t mean it isn’t possible #BCSM |
| Beverly A. Zavaleta MD @BZavaletaMD @DrAttai @akknowles1 @UppityCancerP @SpiveySandra @stage4kelly @itsnot_pink @christeeny513 Yes! The advocates you listed are great. However the patients I’m thinking of don’t have access to computers/smart phones. I work/live in low-resource area. Wondering about a way to do televisit at office? #bcsm |
| Sandra Spivey @SpiveySandra @akknowles1 #bcsm More of the big cancer centers are doing telemedicine. Check out that term along with psychotherapy. |
| Dr. Deanna Attai @DrAttai Thank you @NinezPonce and the @UCLAchpr team for participating tonight! #bcsm |
| DSP--💙🐦🟦✡️ @drawstickpeople @DrAttai Thank you for doing this! #bcsm |
| Dr. Deanna Attai @DrAttai And while @stales isn't with us tonight, we can still end with a <<<GROUP HUG>>> and good night, moon! #bcsm |
| forthebreastofus @thebreastofus @DrAttai Yes, a lot of times pts have to be off of work consecutively for 12 weeks before their application is looked at. And you have to exhaust all of your benefit time as well. #BCSM |
 | Mary Farrell Ajango @MaryAjango RT @outcomes4me: Male breast cancer is rare but real: Male breast cancer is rare but real: 1 in 833 men will be diagnosed with breast cancer. At #Outcomes4Me, we know that #menhavebreaststoo. If you have male breast cancer or know someone who does, and you want to help, please reach out to breastcancer@outcomes4me.com. #bcsm #mbc |
| Lisa Hagen @lisa_hagen22 Goodnight. Have a great week #bcsm |
| Beverly A. Zavaleta MD @BZavaletaMD @denniskeim @akknowles1 @DrAttai @UppityCancerP This is what my area needs - nurse-navigators. And advocates. Even teleadvocates #bcsm |
| Dennis Keim @denniskeim @akknowles1 @SusanRuddick1 @DrAttai @UppityCancerP I'm sorry to hear that. They should have access like everyone else. I do recall mine saying she was loaded up with just folks going through their initial treatment. As I went out, someone came into her care. This is an area that needs a lot more focus. #bcsm |
| Sandra Spivey @SpiveySandra @BZavaletaMD @DrAttai @akknowles1 @UppityCancerP @stage4kelly @itsnot_pink @christeeny513 #BCsm There are a number of MBC peer support helplines - SHARE, LBBC & After Breast Cancer Diagnosis - if they have access to a phone, they can be matched with an MBC peer helpline volunteer. |
| Susan Ruddick @SusanRuddick1 @DrAttai @stales Goodnight, have a great week! Thanks for the great job you did tonight! #bcsm https://t.co/emqTXuaHut |
| Beverly A. Zavaleta MD @BZavaletaMD @DrAttai @stales Thank you @DrAttai !! #bcsm |
| Dennis Keim @denniskeim @SusanRuddick1 @akknowles1 @DrAttai @UppityCancerP Mine was located at a local hospital as part of their general services. I met her in person several times. #bcsm |
| Dr. Deanna Attai @DrAttai RT @SpiveySandra: @BZavaletaMD @DrAttai @akknowles1 @UppityCancerP @stage4kelly @itsnot_pink @christeeny513 #BCsm There are a number of MBC peer support helplines - SHARE, LBBC & After Breast Cancer Diagnosis - if they have access to a phone, they can be matched with an MBC peer helpline volunteer. |
| Dr. Deanna Attai @DrAttai @denniskeim @akknowles1 @SusanRuddick1 @UppityCancerP just passed this along to @NinezPonce and her team - I agree it's a big issue for #MBC patients #bcsm |
| Hillary (Stires) Andrews, PhD @HillStirSci @DrAttai @stales ❤️🌙 #bcsm |
| Dr. Deanna Attai @DrAttai @UppityCancerP if you've got more to share, we'll take it! #bcsm |
| Dr. Deanna Attai @DrAttai @akknowles1 going to try to do a transcript in a few min :) #bcsm |
| Dr. Deanna Attai @DrAttai cc @NinezPonce |
| Sandra Spivey @SpiveySandra @BZavaletaMD @DrAttai @UppityCancerP #BCsm - I know many advocates who live in remote areas. Many groups do webinars and video conference calls to help develop advocates in the US no matter where they live. Advocates in Science is one of those groups. |
| Dennis Keim @denniskeim Maybe it would be a good idea to have a national nurse navigator organization that would work like a hotline. So even remote access. #bcsm |
| Sandra Spivey @SpiveySandra @akknowles1 @BZavaletaMD @DrAttai @UppityCancerP @stage4kelly @itsnot_pink @christeeny513 #bcsm I find it easier to find advocates on Facebook. Just search breast cancer advocate |
| Dr. Deanna Attai @DrAttai @throckad ha! I certainly forget the hashtag often enough, thanks for your comments! #bcsm |
| Dr. Deanna Attai @DrAttai RT @SpiveySandra: @BZavaletaMD @DrAttai @UppityCancerP #BCsm - I know many advocates who live in remote areas. Many groups do webinars and video conference calls to help develop advocates in the US no matter where they live. Advocates in Science is one of those groups. |
| Susan Ruddick @SusanRuddick1 @DrAttai They need to be specifically trained for all areas.#bcsm |
| Uppity Cancer Pt @UppityCancerP @DrAttai Hope you all do a survey. So much more feedback we get for you. Appreciate all you're doing. #bcsm |
#BCSM content from Twitter.