#BCSM Transcript

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

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NCI Cancer Stats @NCICancerStats
When diagnosed at the localized stage, #BreastCancer has a 98.8% 5-year relative survival rate. Learn more here: https://t.co/wUKAVfKF1H #BCSM https://t.co/3unCTe8zHo
Kimberli S. Cox MD @kimberli_coxmd
Breast surgeon in chilly PHX (really) checking in while walking the dog #bcsm https://t.co/Ribmn4hb5o
Howard Karpoff @doctorkarpoff
9 pm on the east coast: was 80° for this breast surgeon just slightly northwest of NYC #bcsm
Howard Karpoff @doctorkarpoff
RT @stales: HEY #BCSM - We need to share this far and wide. UCLA research survey - endocrine therapy use, side effects, role of the treatment team. Open to anyone treated for breast cancer - please SHARE and RT #bcsm https://t.co/Qf1eRg53I6 https://t.co/bmkrhBg6b7
ISBP @TheISBP
RT @ASCOPost: Trastuzumab Deruxtecan in Advanced HER2-Positive Gastric and Breast Cancers https://t.co/qGUK6A7mJf #bcsm #stcsm #oncology
Hillary Andrews, PhD @HillStirSci
@itsthebunk Hi everyone! I'm Hillary, former breast cancer research scientist, current cancer research advocate and health and science policy wonk (in the making). #bcsm
Kathy Gori @kathygori
@kimberli_coxmd Shibas are such cuties! #bcsm
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
@kimberli_coxmd A Shiba Inu! Love those dogs. @1111linno has one, name is Kumo. Super dog. #bcsm
Stephanie Graff, MD, FACP, FASCO @DrSGraff
Hello #bcsm 👋🏻 Breast Med Onc excites to learn tonight!
Liza B @itsthebunk
@DrAttai Howdy! #bcsm
IBC Research Fdn @IBCResearch
Ginny here. Bouncing along on a shuttle bus for the next hour. Was in Dallas for #TBCRC clinical trial mtg. Headed home #BCSM
Erin Miller @LazarexaErin
Hi to everyone - Erin Miller @lazarexcf tuning in for a chat! #bcsm
Gail Zahtz 🇮🇱 @GailZahtz
Hi! Checking in for one of the last weeks from MN before our move back to NY. Professional digital healthcare communicator, personally declined hospice and (BY”H) 2 years NED this month. Formerly wheelchair bound, did the 5k this Mother’s Day for BC research. #bcsm
Julia Maués @itsnot_pink
Hi #bcsm! Happy to be joining from DC to discuss this important topic and great guest host. MBC since 2013
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
Greetings, all! The Mighty Mouth is mostly lurking, since I gotta get up at oh-dark-thirty tomorrow and it's late 'round these parts. Breast cancer dx '07, Stage IIa, since end of '08 NED. #bcsm
Dr. Deanna Attai @DrAttai
@kimberli_coxmd we are chilly in LA as well, enjoying it because summer most definitely will be here soon #bcsm
Inspire @InspireIsHealth
@itsthebunk Hi Liza and all in the #bcsm community, John Novack here from Inspire.
Kathy Gori @kathygori
Hey there, 2x bc’er checking in from chilly rainy Nor Ca 🍷 country where we had believe it or not, snow in Stockton, and other parts of Northern California yesterday. #bcsm
Liza B @itsthebunk
@DrSGraff Hi! Welcome! #bcsm
Terri Coutee @6state
@itsthebunk @stales Thanks @itsthebunk Good evening from the great state of WA on PST @6state #PatientAdvocate for all options of #BreastReconstruction after #mastectomy 2x-er myself and #DIEPflap #bcsm
Howard Karpoff @doctorkarpoff
@itsthebunk last week it was in the 40s...i think i prefer this (except for all the pollen) #bcsm
Kathy Gori @kathygori
@itsthebunk @kimberli_coxmd Hi Liza! #bcsm
Liza B @itsthebunk
@teaminspire Howdy! Welcome, John! #bcsm
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
@itsthebunk @kimberli_coxmd @1111linno #bcsm https://t.co/GzE1kK9Yel
Kimberli S. Cox MD @kimberli_coxmd
@doctorkarpoff 72 and breezy here in Phoenix. I am wearing a coat LOL #bcsm
Gail Zahtz 🇮🇱 @GailZahtz
@MightyCasey @itsthebunk @kimberli_coxmd @1111linno Casey, always one to come in with fin, um fan-fare ;-) #BCSM
Jennifer Plichta MD (she/her) @JenniferPlichta
RT @DiepFlapBreast: Choosing to “go flat” is an option to be discussed and respected as equally as the many reconstructive procedure options available. #BreastReconstruction #PlasticSurgery #bcsm https://t.co/CDaAEClqSj
Gail Zahtz 🇮🇱 @GailZahtz
Excited about tonight’s topic on many levels- the multiple costs of advocacy (not only financial) #bcsm
IBC Research Fdn @IBCResearch
Look who I found while in Dallas! @paspears88 & @Prof_Riggins While we've all headed back home it was fun to be IRL together! #BCSM https://t.co/8cf3qkhGI3
Matthew J. Sikora, PhD @mjsikora
Welcome to the jungle, K-T! #breastcancer #bcsm #PIlife
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
@GailZahtz @itsthebunk @kimberli_coxmd @1111linno #bcsm https://t.co/wrqaQmCkr9
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
I think I need gin ... #bcsm
Lex @Lex_in_CO
Chilling under a blanket in No Colorado. Dx stage4 de novo 2013 and still here #bcsm
IBC Research Fdn @IBCResearch
@itsthebunk Thanks...its a bit bumpy & poor signal but I'm here! #bcsm
Hello_U👋🏼 @MommysCancer
#breastcancer chat happening right now!
FollowHeidi @FollowHeidi
Hello all - so happy to be able to join my #bcsm team tonight! Heidi in Atlanta...2 x dx, stage iiib
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
@itsthebunk Oh, no problems. Just late here, and I want dinner! Until then ... gin? Magic 8 Ball sez "signs point to YES" #bcsm
Hillary Andrews, PhD @HillStirSci
@itsthebunk @FollowHeidi I was thinking the same thing! Hi friend! #bcsm
Gail Zahtz 🇮🇱 @GailZahtz
A1- Financial costs of advocacy- this has been a big topic lately with a lot of people I’ve been talking with. Conferences, travel, extra time needed if someone isn’t doing great physically and/or needs a caregiver to also come- it really adds up- and who pays? #BCSM
Hillary Andrews, PhD @HillStirSci
@MetastaticOdds Hey Josh! 👋 #bcsm
Sandi Stanford @sandisues
RT @drchrysopoulo: At PRMA we use the @BreastAdvocate app to reduce such time constraints & greatly facilitate the #SharedDecisionMaking process. The app provides patients access to the info they need both before & after the doctor visit. #BreastCancer #BRCA #BreastReconstruction. @diepflapbreast
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
WHOA DANG. I warned you. #ginofuckingclock #bcsm https://t.co/zUrN9xrYHy
Breast Advocate @BreastAdvocate
RT @matteolambe:
Gail Zahtz 🇮🇱 @GailZahtz
I think this really needs to be addressed. We talk about #patientsincluded and patients being a voice “at the table” but the costs of travel, its complexity and the reality of living life with a condition can make it too hard. #BCSM
IBC Research Fdn @IBCResearch
T1a I get creative. Scholarships, help with the conf, share rooms, travel by bus....basically pick what's most imp to you & search out ways to do it. Most of us dont have unlimited $$$ #BCSM
FollowHeidi @FollowHeidi
@itsthebunk Me too- this happens ALL the time to me. Makes me blue... #bcsm
Liza B @itsthebunk
RT @GailZahtz: I think this really needs to be addressed. We talk about #patientsincluded and patients being a voice “at the table” but the costs of travel, its complexity and the reality of living life with a condition can make it too hard. #BCSM
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
T1(whatevs) general observation: I call all advocacy appearance/content requests from funded entities that do NOT include $$ for advocate/activist "warm handshakes/cold bagels payment model" and say **** no. LOUD. #bcsm
Julia Maués @itsnot_pink
RT @GailZahtz: A1- Financial costs of advocacy- this has been a big topic lately with a lot of people I’ve been talking with. Conferences, travel, extra time needed if someone isn’t doing great physically and/or needs a caregiver to also come- it really adds up- and who pays? #BCSM
Gail Zahtz 🇮🇱 @GailZahtz
My twitter is not working right. I need a twitter mechanic, or plumber- I’m in the chat #bcsm and can mostly only see my tweets and the @itsthebunk moderator. Hm... and, thank goodness @MightyCasey gin escapades.
Julia Maués @itsnot_pink
RT @GailZahtz: I think this really needs to be addressed. We talk about #patientsincluded and patients being a voice “at the table” but the costs of travel, its complexity and the reality of living life with a condition can make it too hard. #BCSM
Jamil Kali @jamilkali
RT @CancerDotNet: A @JCO_ASCO study shows less than half of women with breast or #ovariancancer do not receive #genetictesting. @StanfordCancer’s Dr. Allison Kurian explains how it helps predict risk, and why it is so important:: https://t.co/5go07l0II9 #genetics #bcsm #breastcancer #gyncsm
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
T1: as a #patientsincluded charter author, I am ON BLAST with there has to be something in this for me. Warm fuzzies don't pay my rent. #FYPM #bcsm
Lex @Lex_in_CO
Truth. As a patient still working I would love to consider more options but treatments cause missed work too so missing that paid time is also a consideration
Gail Zahtz 🇮🇱 @GailZahtz
T1 A very recent conversation (would cc, but @itsthebunk I think you asked us not to mention people?) included ideas of having a checklist of what advocates need in order for travel to be possible, more than conference fees or even only hotels. #bcsm
Terri Coutee @6state
@itsthebunk Not always. Be savvy. For meals, there are often free events sponsored by companies who want to engage with the #patientadvocacy community. #PatientStoriesMatter Express a collaborative effort to help the community you serve. #bcsm
Tori Geib @ChefGeib
@itsthebunk More often than not: no. The hardest thing for advocates who are also on disability is coming up with the funds up front to be reimbursed. Conferences that have covered travel (flight/hotel) make it MUCH easier when we are already financially struggling in many cases. #bcsm
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
T1: if you don't know what #patientsincluded involves, here you go: https://t.co/B5qE0pWMZf #bcsm
Gail Zahtz 🇮🇱 @GailZahtz
@Lex_in_CO Is it the pay or the time or both? EG would additional compensation make a differrence? #BCSM
Liza B @itsthebunk
RT @MightyCasey: T1: if you don't know what #patientsincluded involves, here you go: T1: if you don't know what #patientsincluded involves, here you go: https://t.co/B5qE0pWMZf #bcsm
Julia Maués @itsnot_pink
T1 #bcsm: Some organizations really do it right! @MetastaticOdds is one. The 6thMBCc is coming up on September 19-20 and the advocacy scholarship application process opened today: https://t.co/nmESriGPrC. It's a medical conference with a large advocacy contingency and program
Gail Zahtz 🇮🇱 @GailZahtz
@MightyCasey @itsthebunk Latest #BCSM
Terri Coutee @6state
RT @MightyCasey: T1: if you don't know what #patientsincluded involves, here you go: T1: if you don't know what #patientsincluded involves, here you go: https://t.co/B5qE0pWMZf #bcsm
Gail Zahtz 🇮🇱 @GailZahtz
RT @MightyCasey: T1: if you don't know what #patientsincluded involves, here you go: T1: if you don't know what #patientsincluded involves, here you go: https://t.co/B5qE0pWMZf #bcsm
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
@itsthebunk Oh, sweet baby Jesus on a Ritz cracker, where do I start? This is endemic in the solopreneur/consulting game, too, so I at least was prepared when I pivoted into healthcare. 1st: don't be grateful they asked, YOU have the secret sauce (you speak #patient) #bcsm
Leslie @Leslieks
Sorry I'm late! Hey gang! #bcsm
Stephanie Graff, MD, FACP, FASCO @DrSGraff
I heard @DrAttai mention donating airline miles for advocates once...I’d love a list of orgs that allow for that. Such an easy way to give. #bcsm
Stephanie Graff, MD, FACP, FASCO @DrSGraff
RT @itsnot_pink: T1 #bcsm: T1 #bcsm: Some organizations really do it right! @MetastaticOdds is one. The 6thMBCc is coming up on September 19-20 and the advocacy scholarship application process opened today: https://t.co/nmESriGPrC. It's a medical conference with a large advocacy contingency and program
metaMartha @Martha__Carlson
Martha in IL ... Hi! Almost 4 1/2 years with mets. #bcsm
Gail Zahtz 🇮🇱 @GailZahtz
@itsthebunk Oh, good, then a shoutout to @BarbyIngle and the @powerofpain They give high subsidizes for their events and she does advocacy for patients being able to be fairly compensated for advocacy so it’s possible. #BCSM
Liza B @itsthebunk
@DrSGraff @DrAttai YES! great idea! That could help so much! #bcsm Especially for cross-country flights when the max the orgs allow in scholarships is $400/$500 for MOnday travel #bcsm
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
@itsthebunk it's easy at the beginning to be grateful AF that "somebody noticed me and my message!" but don't let that mindset take over. Read some freelance + solo consulting blogs for tips. You're an asset. Bill accordingly! #bcsm
Liza B @itsthebunk
RT @MightyCasey: @itsthebunk Oh, sweet baby Jesus on a Ritz cracker, where do I start? This is endemic in the solopreneur/consulting game, too, so I at least was prepared when I pivoted into healthcare. 1st: don't be grateful they asked, YOU have the secret sauce (you speak #patient) #bcsm
Barby Ingle Official @BarbyIngle
RT @GailZahtz: @itsthebunk Oh, good, then a shoutout to @BarbyIngle and the @powerofpain They give high subsidizes for their events and she does advocacy for patients being able to be fairly compensated for advocacy so it’s possible. #BCSM
Gail Zahtz 🇮🇱 @GailZahtz
@itsnot_pink @MetastaticOdds Do they cover other costs beyond the conference itself? Just wondering what others are doing. Recent conversations lead to ideas that we need to find ways to help with additional costs of patient advocate attendance. #BCSM
Terri Coutee @6state
@DrSGraff @itsthebunk @DrAttai Love this idea @DrSGraff and @DrAttai Sign me up! #bcsm
Terri Coutee @6state
RT @DrSGraff: I heard @DrAttai mention donating airline miles for advocates once...I’d love a list of orgs that allow for that. Such an easy way to give. #bcsm
Lex @Lex_in_CO
@GailZahtz Both but compensation would make it more doable #BCSM also an “Invite” letter to take to boss maybe too 🤷‍♀️
Inspire @InspireIsHealth
RT @itsnot_pink: T1 #bcsm: T1 #bcsm: Some organizations really do it right! @MetastaticOdds is one. The 6thMBCc is coming up on September 19-20 and the advocacy scholarship application process opened today: https://t.co/nmESriGPrC. It's a medical conference with a large advocacy contingency and program
FollowHeidi @FollowHeidi
@itsthebunk Due to the financial costs of #breastcancer advocacy, many underserved women rarely get a chance to have their voices heard...even when the topic is focused on women in need! It’s a ridiculous situation. #bcsm
International Pain Foundation® @iPainOfficial
RT @GailZahtz: @itsthebunk Oh, good, then a shoutout to @BarbyIngle and the @powerofpain They give high subsidizes for their events and she does advocacy for patients being able to be fairly compensated for advocacy so it’s possible. #BCSM
Julia Maués @itsnot_pink
@itsthebunk Registration fees are another issue! I'm in DC so conferences that are here I can attend without travel costs. But as @itsthebunk has heard me say "I'm already working for free! Can't expect me to pay to do it!" #bcsm
Liza B @itsthebunk
RT @FollowHeidi: @itsthebunk Due to the financial costs of #breastcancer advocacy, many underserved women rarely get a chance to have their voices heard...even when the topic is focused on women in need! It’s a ridiculous situation. #bcsm
Gail Zahtz 🇮🇱 @GailZahtz
If we really want patient advocates at conferences and other travel events, we have to make real compensation for expense that are just realistically higher for patient advocates than say hcp advocates. For example, perhaps longer stays for rest. Caregiver coverage. #bcsm
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
@itsthebunk If you're not sure what the heck I'm talking about, start with @ThisIsSethsBlog and Erika Napoletano https://t.co/0qsTPIntUV #bcsm
Terri Coutee @6state
As more an more specialties welcome the #PatientAdvocacy voice and presence at conferences, 1. Lower registration fees 2. Special hotel pricing 3. Planned events to discuss topics with meals included (think sponsored events) #bcsm
Gail Zahtz 🇮🇱 @GailZahtz
A recent conversation with awesome #medlibs women- covering daycare while at conferences a fabulous benefit. Moms (and Dads) who can only travel with kids, this is a big differentiator. #bcsm
Julia Maués @itsnot_pink
@GailZahtz @MetastaticOdds The conference registration is free for patient advocates and they cover hotel plus give a flight stipend. All carefully thought out to maximize number of advocates and minimize each advocate's out-of-pocket cost #bcsm
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
@Martha__Carlson Welcome, Martha!! #bcsm
Julia Maués @itsnot_pink
RT @MetastaticOdds:
Liza B @itsthebunk
RT @GailZahtz: A recent conversation with awesome #medlibs women- covering daycare while at conferences a fabulous benefit. Moms (and Dads) who can only travel with kids, this is a big differentiator. #bcsm
Barby Ingle Official @BarbyIngle
@GailZahtz @itsthebunk @powerofpain Thank you for the shout out! We do what we can!!!! Nov 14-16, 2019. UCLA Luskin Conference Center. #iPainSummit2019 #BCSM
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
@GailZahtz OMFG #medlibs are AMAZEBALLS. Follow @pfanderson if you don't already. #bcsm
Liza B @itsthebunk
RT @BarbyIngle: @GailZahtz @itsthebunk @powerofpain Thank you for the shout out! We do what we can!!!! Nov 14-16, 2019. UCLA Luskin Conference Center. #iPainSummit2019 #BCSM
Gail Zahtz 🇮🇱 @GailZahtz
What a great idea- a letter for work, perhaps with benefits of employee attendance? #bcsm
Living Beyond Breast Cancer @LivingBeyondBC
Find support and connect with other young women impacted by #breastcancer in our closed Facebook group. Talk honestly with others about parenting, weight gain, body image, and more. Ask questions and get support from others who understand. Join now: https://t.co/62nbwvRsEu #bcsm https://t.co/cFnJIOHCop
Liza B @itsthebunk
RT @MightyCasey: @GailZahtz OMFG #medlibs are AMAZEBALLS. Follow @pfanderson if you don't already. #bcsm
FollowHeidi @FollowHeidi
In order to attend events as an #advocate, I use vacation days from my full-time job. Many #breastcancer #Patients don’t have that same opportunity, and therefore can’t attend. #bcsm
Gail Zahtz 🇮🇱 @GailZahtz
@MetastaticOdds @itsnot_pink Excellent #BCSM
Leslie @Leslieks
@itsthebunk One of the reasons I don't travel much is travel drains me so badly. I get sick after and end up needing even more time off. #bcsm
Dr. Deanna Attai @DrAttai
@MetastaticOdds @GailZahtz @itsnot_pink incredible work, thanks for sharing #bcsm
Liza B @itsthebunk
RT @FollowHeidi: In order to attend events as an #advocate, I use vacation days from my full-time job. Many #breastcancer #Patients don’t have that same opportunity, and therefore can’t attend. #bcsm
Gail Zahtz 🇮🇱 @GailZahtz
@MightyCasey @pfanderson I just adore her and her tribes! #BCSM
metaMartha @Martha__Carlson
@itsnot_pink @GailZahtz @MetastaticOdds This was first research conf I attended. Loved it. #bcsm
Leslie @Leslieks
@itsthebunk Are there conferences with scheduled nap times? 😂 #BCSM
IBC Research Fdn @IBCResearch
@FollowHeidi @itsthebunk Good point Heidi. It's important that those folks are there to bring their own voice. #bcsm
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
T2: confession - I still am able to be [mostly] energizer bunny level when I need to be. Some of it's genetic (my 'rents were social extrovert AF, fed on interaction), count myself lucky at almost-70-yo that I can still show up. But I do need rest more often now. #bcsm
Tori Geib @ChefGeib
@itsthebunk The upfront costs have been what has kept me from attending some conferences that I felt would be beneficial. Ex: $400 per/night for a hotel for a 3 day conference + other travel and conference fees when you only make $1200 a month is impossible. #bcsm
Tori Geib @ChefGeib
@MetastaticOdds @itsthebunk @GailZahtz @itsnot_pink That is a HUGE help! Thank you! #bcsm
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
HAH. I hadn't had a "vacation" in over a decade when I got TWO last year. Getting another one next month. Lots of work interspersed, but still ... #winning #bcsm
Terri Coutee @6state
@itsthebunk One word .... coffee ☕️😂 #bcsm
Gail Zahtz 🇮🇱 @GailZahtz
@Leslieks @itsthebunk Seriously, we’ve been talking about this- many patients need scheduled rest time. The schedules can be too demanding while juggling with one’s own illness. A break place for rest would be really excellent for #inclusion #BCSM
Barby Ingle Official @BarbyIngle
@itsthebunk T2. When I have an event I know to rest before and after. And sometimes even during, I go to classes and exhibitors but skip dinners and extra outings. Bring blankets and pillows as needed. Comfy clothes, etc #bcsm I live an extreme time cheaters life at home and when out.
Leslie @Leslieks
@DrAttai @itsthebunk I'm telling you we need a spa weekend meet up. Turn it into advocacy, sort of our own conference. #bcsm
Lex @Lex_in_CO
@GailZahtz Yep. See some from work vendors too. Especially if it even touches on “working” with cancer Staying productive Teleworking solutions etc. make it a win win 👍 #BCSM
Julia Maués @itsnot_pink
@itsthebunk SABCS was intense. And we didn't really have a place to hang out and just relax. Again, especially hard for metastatic patients on drugs forever. An advocate lounge is definitely a must. With food! #bcsm
Gail Zahtz 🇮🇱 @GailZahtz
@BarbyIngle @itsthebunk See, I knew she’d be great on this topic ;-)) #BCSM
wwLeslie @wwleslie
Yup. I still need scheduled rest time. #bcsm
Liza B @itsthebunk
@GailZahtz @Leslieks Yes, the @StanfordMedX Wellness Room has been hugely helpful! #medx #bcsm
Julia Maués @itsnot_pink
@Martha__Carlson @GailZahtz @MetastaticOdds you started with the best! #bcsm
Gail Zahtz 🇮🇱 @GailZahtz
@Lex_in_CO Would love this on a list. #BCSM
Kathy Gori @kathygori
@itsthebunk @FollowHeidi I’d go if it was nearby, say UCSF but my schedule would be too tight for other places , but I don’t know much about how to do that #bcsm
Enlightening Results 💡 @GraceCordovano
RT @MightyCasey: @GailZahtz OMFG #medlibs are AMAZEBALLS. Follow @pfanderson if you don't already. #bcsm
Dr. Deanna Attai @DrAttai
@MetastaticOdds @LynnHowie1 @DrSGraff Oh - great to know! Do you have a program link you can share? This is great news! #bcsm
Tori Geib @ChefGeib
@itsthebunk I look at sessions with other advocate friends that are going beforehand so we can sometimes divide, conquer and make sure we are still practicing self care. We still go to some all together, but scheduling this ahead of time helps. We always meet up and share notes later #bcsm
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
@kimberli_coxmd Yeah, that's totally a consideration to be put near top of the list. Key is for person to KNOW and SPEAK UP about what their needs/limits are. #epatient advocate/activist folx must view this as WORK, and construct schedule THEY need. #bcsm
Gail Zahtz 🇮🇱 @GailZahtz
@itsthebunk @itsnot_pink Yes! Very few people outside of the patient/hcp community understand that the challenges can be equally as big when someone is NED than during “active” cancer. Let’s not judge people’s needs but find ways to meet them. #BCSM
Gail Zahtz 🇮🇱 @GailZahtz
T2- What we’re doing right here can help. I’ve been at conferences with other advocates and we’ve tag teamed together to do social media coverage for ourselves and others- share, collaborate and lessen the burden. #bcsm
Enlightening Results 💡 @GraceCordovano
@DrSGraff @DrAttai I have reached out to the people @gofundme, suggesting new services such as hotel reward point & airline miles donations to be pitched to their new product team. I keep emphasizing the unmet needs patients & carepartners face. Send them a note. #bcsm
Liza B @itsthebunk
RT @MightyCasey: @kimberli_coxmd Yeah, that's totally a consideration to be put near top of the list. Key is for person to KNOW and SPEAK UP about what their needs/limits are. #epatient advocate/activist folx must view this as WORK, and construct schedule THEY need. #bcsm
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
I just hit the wall that says "switch off, girl" - early reveille tomorrow, so I gotta bail. Much love, all! #bcsm
Kimberli S. Cox MD @kimberli_coxmd
@MightyCasey Exactly: speak up! And event planners need to ask, “how canI help,what do you need?” #bcsm
Kimberli S. Cox MD @kimberli_coxmd
RT @MightyCasey: @kimberli_coxmd Yeah, that's totally a consideration to be put near top of the list. Key is for person to KNOW and SPEAK UP about what their needs/limits are. #epatient advocate/activist folx must view this as WORK, and construct schedule THEY need. #bcsm
IBC Research Fdn @IBCResearch
I do t take my own advice well but recommend being very deliberate in picking what to attend & pace yourself. You know what you can do #bcsm
Julia Maués @itsnot_pink
@itsthebunk Again, I'll mention @MetastaticOdds's conference. He's been talking to MBC patients to design the advocacy program and will incorporate our idea of a wellness session (yoga or meditation) before or after the conference (sorry, Josh, no way out now!) #bcsm https://t.co/nmESriGPrC
Gail Zahtz 🇮🇱 @GailZahtz
@kimberli_coxmd @MightyCasey We were talking about a patient advocate checklist- other needs that advocates may or may not think about before attending. When I was a main speaker at a conference and in an electric wheelchair at the time, none of us accounted for my transportation. I got stuck till 1am. #BCSM
Tori Geib @ChefGeib
@itsthebunk Know you don’t have to attend everything in the moment, especially if the sessions are available by recording after the fact. I try to make sure to attend in person what I can; knowing I can see some of the sessions later takes the pressure away from having be everywhere #bcsm
couragesings @couragesings
RT @GailZahtz: @Leslieks @itsthebunk Seriously, we’ve been talking about this- many patients need scheduled rest time. The schedules can be too demanding while juggling with one’s own illness. A break place for rest would be really excellent for #inclusion #BCSM
Gail Zahtz 🇮🇱 @GailZahtz
T3- emotional costs of advocacy- my younger two children right now who are never happy when I’m doing evening chats. It cuts into Mommy time. That’s just honest. #bcsm
IBC Research Fdn @IBCResearch
The losses we face take a huge emotional toll. You have to find a way to cope. #bcsm
Terri Coutee @6state
@itsthebunk I hit a wall earlier this year. Last year had many hi's and lo's for me. I highly recommend checking out @afreshchapter #Renewal #Recharge #Refresh and stepped out of our daily roles and peaked into other advocacy in April '19: https://t.co/RhkSyL4rYX #bcsm
Gail Zahtz 🇮🇱 @GailZahtz
About advocate lounges- also making sure that everything that advocates would attend is accessible for all. It’s hard enough traveling as a patient advocate, one shouldn’t have to ask to be “accommodated” #bcsm
Terri Coutee @6state
@DrAttai @itsthebunk I noticed 😊👟#bcsm
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
Oh my ****ING GAWD I can't leave until I address this. Being required to "perform your pain" or relive your experience on a loop, ad infinitum is ... insulting. A body of work includes lived experience. Put it on your CV, and then use that CV. #bcsm
Dr. Deanna Attai @DrAttai
@6state @itsthebunk thanks for not calling me out! #bcsm
inteliquet, an IQVIA business @inteliquet
RT @stales: HEY #BCSM - We need to share this far and wide. UCLA research survey - endocrine therapy use, side effects, role of the treatment team. Open to anyone treated for breast cancer - please SHARE and RT #bcsm https://t.co/Qf1eRg53I6 https://t.co/bmkrhBg6b7
Julia Maués @itsnot_pink
@IBCResearch Yes! My thought process is usually: - Why I am doing this? - So my friends and I can live longer - Why do I want to live longer? - To spend more time with my son - Then be conscious of not missing too much time with my son while I'm still here #bcsm
metaMartha @Martha__Carlson
RT @IBCResearch: The losses we face take a huge emotional toll. You have to find a way to cope. #bcsm
Gail Zahtz 🇮🇱 @GailZahtz
Thanks Liza. I am so grateful for my personal patient journey experiences, because each one helps me better advocate for others. We were thinking about a checklist that could help advocates know what their extra needs would be- different for each patient and time. #BCSM
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
@itsthebunk @GailZahtz @kimberli_coxmd FYI @HealthHats has some GREAT stuff on this. https://t.co/YMkK4J9fnR #bcsm
Terri Coutee @6state
RT @GailZahtz: About advocate lounges- also making sure that everything that advocates would attend is accessible for all. It’s hard enough traveling as a patient advocate, one shouldn’t have to ask to be “accommodated” #bcsm
Lex @Lex_in_CO
A3 might be small personal roadblock for me. Asking for help (even $ vs still wanting to prove I can do it all). Newsflash I can’t but get stuck in that gear at times. #bcsm
Gail Zahtz 🇮🇱 @GailZahtz
@MightyCasey On a different side: I’ve been interviewing for a new gig. I didn’t include my patient journey at ALL on LinkedIn or wherever. I had to explain my hiatus, it came up, and found that people viewed it as a huge asset to my hc work. Who knew? #BCSM
Terri Coutee @6state
@GailZahtz @itsthebunk Great way to connect and collaborate, too @GailZahtz #bcsm
Julia Maués @itsnot_pink
@IBCResearch The hardest part ever #bcsm
Gail Zahtz 🇮🇱 @GailZahtz
@6state @itsthebunk Yes, let’s see side events in lounges, where there is child care, connected family and caregiver events. Great place for personal relationships to tweetchats. Let’s expand the work based on advocate needs rather than make it smaller! #BCSM
Tori Geib @ChefGeib
@itsthebunk Build relationships with other advocates. Not only have they become some of my dearest friends, at the end of the day they are the ones who truly know the ups and downs of what I’m going through as an advocate living with #MBC Patient advocates become our own support system #bcsm
Julia Maués @itsnot_pink
@itsthebunk I'll just emphasize @IBCResearch's point about the toll of losing friends we make along the way. It is SO HARD. Last month I was in a hotel here in DC and remembered the last time I was there two friends were with me and now they're both gone 😢 #bcsm
Adrian Lee @Adrianvlee
Very proud moment! Congrats to @npriedig and all in the Lee-Oesterreich lab for providing such a nurturing environment. @oesterreichs @UPMCHillmanCC @pittcmu_mstp @PittTweet #bcsm https://t.co/hqmCBpj7r6
Gail Zahtz 🇮🇱 @GailZahtz
I don’t know if it’s a pet peeve per sey, but if anyone has advice on how they balance off hours’ advocacy with family- I’m so open to hearing it. Just the evening chats alone cause tension with my kids. Ideas welcome! #bcsm
Gail Zahtz 🇮🇱 @GailZahtz
RT @ChefGeib: @itsthebunk Build relationships with other advocates. Not only have they become some of my dearest friends, at the end of the day they are the ones who truly know the ups and downs of what I’m going through as an advocate living with #MBC Patient advocates become our own support system #bcsm
Hillary Andrews, PhD @HillStirSci
Lessons for cancer research conference organizers from #bcsm: -when planning a conference, include patient advocates from day 1 -secure funding BEFORE asking advocates to attend -ensure your speakers know advocates will be present (#scicomm!) -have a designated advocate area
Andrea @BraveBosom
@BartosChristina @CRGHFertility Hugs to you! You are brave for sharing your experiences and so glad the fertility preservation was a success. Have you heard about the #BCSM community?
Julia Maués @itsnot_pink
@itsthebunk I have one important one: A speaker absolutely needs to have their travel paid for, no excuses. #bcsm
Gail Zahtz 🇮🇱 @GailZahtz
@itsthebunk @Lex_in_CO This is why we need to be proactive to help advocates be advocates. As you mentioned, being a patient means asking for help more than anyone would have ever imagined. A cost of advocacy shouldn’t be going into that reserve. #BCSM
Tori Geib @ChefGeib
@itsthebunk Also, I treat advocacy as my job and have developed boundaries to have a “work/life balance”, but it’s taken a while. Saying no is the hardest thing for me still because it feels like an opportunity lost, but I have to balance my self care and needs along with my work #bcsm
Julia Maués @itsnot_pink
@ChefGeib @itsthebunk Yes! And we need to support each other #bcsm
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
RT @GailZahtz: @MightyCasey On a different side: @MightyCasey On a different side: I’ve been interviewing for a new gig. I didn’t include my patient journey at ALL on LinkedIn or wherever. I had to explain my hiatus, it came up, and found that people viewed it as a huge asset to my hc work. Who knew? #BCSM
Andrea @BraveBosom
Hey #BCSM! Please share some love and follow @BartosChristina who is documenting her journey #prechemo and experience with fertility preservation. #BRCA
FollowHeidi @FollowHeidi
@itsthebunk I’ve always like the idea of sponsors helping #patients get to #advocacy events-it can be done easily! Companies+individuals can donation airline miles, hotel points, rental car points, etc. people are afraid to ask for this kind of assistance but it’s necessary. #bcsm
Terri Coutee @6state
RT @HillStirSci: Lessons for cancer research conference organizers from #bcsm: Lessons for cancer research conference organizers from #bcsm: -when planning a conference, include patient advocates from day 1 -secure funding BEFORE asking advocates to attend -ensure your speakers know advocates will be present (#scicomm!) -have a designated advocate area
Lex @Lex_in_CO
So to this and other QOL topics after my dx I started taking my daughter with me to work conferences. Evenings were still family time #BCSM finding a way to fit it all in 💕
Gail Zahtz 🇮🇱 @GailZahtz
@itsthebunk @itsnot_pink @IBCResearch @MightyCasey I still feel Jodi’s presence at every #BCSM
FollowHeidi @FollowHeidi
Getting #cancer #patients to events for education, support or even rest should be a crucial focus for #healthcare companies! #bcsm
Gail Zahtz 🇮🇱 @GailZahtz
RT @FollowHeidi: @itsthebunk I’ve always like the idea of sponsors helping #patients get to #advocacy events-it can be done easily! Companies+individuals can donation airline miles, hotel points, rental car points, etc. people are afraid to ask for this kind of assistance but it’s necessary. #bcsm
Tori Geib @ChefGeib
RT @HillStirSci: Lessons for cancer research conference organizers from #bcsm: Lessons for cancer research conference organizers from #bcsm: -when planning a conference, include patient advocates from day 1 -secure funding BEFORE asking advocates to attend -ensure your speakers know advocates will be present (#scicomm!) -have a designated advocate area
Liza B @itsthebunk
RT @FollowHeidi: @itsthebunk I’ve always like the idea of sponsors helping #patients get to #advocacy events-it can be done easily! Companies+individuals can donation airline miles, hotel points, rental car points, etc. people are afraid to ask for this kind of assistance but it’s necessary. #bcsm
Tori Geib @ChefGeib
RT @itsnot_pink: @itsthebunk I'll just emphasize @IBCResearch's point about the toll of losing friends we make along the way. It is SO HARD. Last month I was in a hotel here in DC and remembered the last time I was there two friends were with me and now they're both gone 😢 #bcsm
Liza B @itsthebunk
RT @FollowHeidi: Getting #cancer #patients to events for education, support or even rest should be a crucial focus for #healthcare companies! #bcsm
Terri Coutee @6state
RT @FollowHeidi: @itsthebunk I’ve always like the idea of sponsors helping #patients get to #advocacy events-it can be done easily! Companies+individuals can donation airline miles, hotel points, rental car points, etc. people are afraid to ask for this kind of assistance but it’s necessary. #bcsm
Tori Geib @ChefGeib
RT @LivingBeyondBC: Find support and connect with other young women impacted by #breastcancer in our closed Facebook group. Talk honestly with others about parenting, weight gain, body image, and more. Ask questions and get support from others who understand. Join now: https://t.co/62nbwvRsEu #bcsm https://t.co/cFnJIOHCop
Gail Zahtz 🇮🇱 @GailZahtz
@Lex_in_CO Yes! This was a whole conversation- let’s have childcare covered as a benefit to attending conferences, make family friendly evening events, and other ways to accommodate, no encourage, parents bringing their children! #BCSM cc @pfanderson
Andrea @BraveBosom
Popping in to say hello #bcsm and sorry I was late! And as usual I'm being totally random today 🤓
Howard Karpoff @doctorkarpoff
RT @HillStirSci: Lessons for cancer research conference organizers from #bcsm: Lessons for cancer research conference organizers from #bcsm: -when planning a conference, include patient advocates from day 1 -secure funding BEFORE asking advocates to attend -ensure your speakers know advocates will be present (#scicomm!) -have a designated advocate area
Hillary Andrews, PhD @HillStirSci
@itsthebunk Who's starting the nonprofit to coordinate airline miles, hotel points, and conferences that support patient advocates?? 😋 #bcsm
Julia Maués @itsnot_pink
@itsthebunk You rocked this @itsthebunk #bcsm
Andrea @BraveBosom
RT @stales: Hey #bcsm crew!! @itsthebunk is guest hosting #bcsm TONIGHT at 6 pm PT/9 pm ET on "The Costs of Advocacy (financial, physical, emotional, etc.) and Ideas to Address Them." Bring your experiences and ideas! cc: @DrAttai
Terri Coutee @6state
@itsthebunk Thanks for hosting this week @itsthebunk Final thoughts, everyone go take some time away from the phone, computer, and drain your brain, put your feet up, eat some chocolate or have @DrAttai send some fresh veggies! Great chat everyone #PatientAdvocacy #bcsm
Lex @Lex_in_CO
RT @GailZahtz: @Lex_in_CO Yes! This was a whole conversation- let’s have childcare covered as a benefit to attending conferences, make family friendly evening events, and other ways to accommodate, no encourage, parents bringing their children! #BCSM cc @pfanderson
Hillary Andrews, PhD @HillStirSci
@itsnot_pink @itsthebunk Couldn't agree more! Such a great conversation. #bcsm
Andrea @BraveBosom
@itsthebunk Looks like I missed a really great topic tonight. BLARGH! #BCSM
Lex @Lex_in_CO
RT @FollowHeidi: Getting #cancer #patients to events for education, support or even rest should be a crucial focus for #healthcare companies! #bcsm
Liza B @itsthebunk
@DrAttai Thanks Deanna! And thank to all! #bcsm
Gail Zahtz 🇮🇱 @GailZahtz
Wrapping up an amazing #bcsm Huge bravo to @itsthebunk for guest hosting and doing an amazing job steering the ship of amazing people! I’ll leave with this: if we truly want to include patient advocates- we should find others to carry the costs so they can be fabulously included!
Tori Geib @ChefGeib
@itsthebunk Thank you for hosting @itsthebunk ! Great job! #bcsm
Gail Zahtz 🇮🇱 @GailZahtz
@HillStirSci @itsthebunk Or can we find one that exists already that could broaden by including this within their mission? #BCSM
Catherine Cole @catcole992003
RT @BreastAdvocate: A new #cancer study made headlines this week as researchers found that a low-fat #diet helps reduce the risk of dying from #BreastCancer. #bcsm https://t.co/4Ji3RgJt8p
Lex @Lex_in_CO
RT @itsnot_pink: @itsthebunk You rocked this @itsthebunk #bcsm
Mary Craige @MaryCraige
Bottom line - avoid processed junk in your diet. Eat the rainbow of fruits and veggies. And move your body every day. #BreastCancer #breastcancerawareness
Hillary Andrews, PhD @HillStirSci
@itsthebunk @itsnot_pink Oh oh! Other last thought - anyone going to @CancerAdvocacy’s CPAT symposium June 25-26? I can’t but can we get together? #bcsm
Lex @Lex_in_CO
Calling it. Team #BCSM rocks! https://t.co/r0SXRL8pga
CONCERT_TCRC @ConcertTcrc
Great work Dr Astrid Przezdziecki!
Kathy Gori @kathygori
@itsthebunk Great job @itsthebunk #bcsm
Eddie's🔁Retweet @edjlazar
RT @SalutDenise:
#BCSM content from Twitter.