Elizabeth Viggiano

@JJ_unlocked My de novo stage 4 diagnosis followed 11 years of annual ‘clear’ mammograms. Even on the day a bone marrow biopsy found ILC cells in bone and marrow, a STAT mammogram (and then MRI!) was ‘clear.’ Sigh.

@darlaine_honey @BreastDense @LobularBCA @elbcc Small sample size likely represents a skewed tendency. However, it is indisputable that ILC has a propensity for the abdomen/peritoneum/omentum and reproductive and GI organs.

@BreastDense @LobularBCA @elbcc I wonder why the highest number of mets found at 22% were in the stage 2b group?

Approximately 1 in 20 patients diagnosed with a primary breast cancer of lobular histology will have metastatic spread to the GI tract, presenting approximately 4 years after their initial primary diagnosis.  @LobularBCA @elbcc #ILC sciencedirect.com/science/articl…

@oesterreichs @LobularBCA Considering lobular patients when designing trials requires acknowledging that lobular is difficult to detect on scans. Something other than RECIST needs to be developed (cfDNA, CTCs??) to allow lobular patients’ response to be reliably evaluated.

And lets also think about #lobular mBC when designing trials since NF1 mutation are enriched. Annals of Oncology 2019. academic.oup.com/annonc/article… @LobularBCA #bcsm

Who's coming to the #NWMetsConf? Join me & the #lobmob & tons of other #BC #MBC pts at the 4th NW Metastatic #BreastCancer conference. FREE! * Hear the latest on #MBC and #lobularBC research * Clinical Trials Fair * Livestreamed and Spanish-translated sessions! More info 👇👇👇

@ihatebreastcanc @LurieCancer “Real world” patients also means patients with non-RECIST measurable disease, patients with multiple lines of previous therapies, and the ability to do interval scans and lab tests at the local institution (provided parameters are able to be met.)

Amen priya kumthekar @LurieCancer who says we need “real world” patients in clinical trials and that means people with brain mets #2019MalnatiBTI #bcsm

@jrgralow @CancerDotNet @ASCO As a person with de novo stage 4 MBC, and a widowed mom of a 15 year old daughter, I applaud anyone who considers the affect of our illness on our children. They suffer, often in silence, as much— or more — than we patients do.

Raising Children And Staying Positive While Living With Chronic Cancer @cancerdotnet @asco cancer.net/blog/2019-04/a…

@stage4kelly @tmprowell @AAADVWorkshop Design trials with alternative evaluation criteria. Those of us with evaluable but non-RECIST disease are excluded far too often. This otherwise healthy, active MBC patient would like to participate in trials but can’t meet that one inclusion criteria.

Thanks to @tmprowell I’ll be at @AAADVWorkshop to provide the #metastatic patient perspective on clinical trials. Let me know what you want me to let them know - and consider coming to the workshop! Scholarships are available

@UppityCancerP @akknowles1 De novo stage 4 at age 52 despite ‘clear’ annual mammograms for 12 preceding years...on the day I was diagnosed (via bone marrow biopsy) a mammogram failed to detect anything. Mammograms are not infallible. Shame on the media for portraying them as a sure thing for detection.

Hooray! Second International #Lobular #breastcancer symposium will be in Pittsburgh May 14 - 16 2020. There will be a strong patient advocacy component @hiplinemedia @jamecancerdoc @maggiemoo09 @smacdon932 @double_whammied @EV11PDX @mbcalliance @MBCNbuzz @MBC_Project #BCSM

CD K 4/6 inhibitors, such as #palbociclib has caused a paradigm shift in the management of ER positive, Her-2 negative #metastaticbreast cancer. This is a look at real world experience from @ClevelandClinic #clecliniccancer @METUPorg @MBCNbuzz @LobularBCA

@stales Trials aren’t offered where underrepresented patients receive treatment... prior treatment regimens and comorbidity exclusions are applied too broadly...surrogate markers of response are lacking (too many willing patients don’t meet RECIST)

We put a man on the moon. We walk around w/ more computing power in our pocket than what they had when we landed on the moon. Yet, we still struggle to find patients for clinical trials. Why?

@LobularBCA @mbcalliance @oesterreichs The LBCA greatly appreciated the opportunity to tell MBC advocates about the vagaries of ILC... looking forward to powerful future collaborations with the MBCA.

#Lobular advocate @EV11PDX presenting for #LBCA @mbcalliance. We are so excited to be a new partner with amazing organizations working for patients with #MetastaticBC @oesterreichs

@EricTopol @npriedig @NatureBiotech Yes, but until I was shockingly diagnosed with de novo stage 4 lobular breast cancer at the age of 53, I was a fit, active, in all regards healthy woman... I would unknowingly make an unreliable subject for this kind of research. We’re well until we are not.

Why are we so fixated on studying people with diseases and not gathering data from healthy individuals? An insightful editorial @NatureBiotech w/ summary of the ongoing efforts to get this on track nature.com/articles/s4158… #OA

@mjsikora @LobularBCA @hiplinemedia @LPseattle Thrilled to have your insights and enthusiasm join our efforts. Together we can make progress understanding and educating about LBC.

@NickiSimone4 Did they find any differences in response between lobular and ductal BC?

Pre-op SBRT for #breastcancer decreases cellularity #ASTRO18. Cool finding. Interesting to see the next steps

@LobularBCA Thanks, LBCA, for using this month to elucidate the ways lobular is different from ductal breast cancer.

Not all #breastcancer is the same! #LBCA will share basic information about how #lobular is different throughout October. Please join us to shine a light on #ILC. Learn about lobular at lobularbreastcancer.org #bcsm #cancer #BreastCancerAwareness

@BeAScientist My 15 year old daughter and I were talking about how supremely angry we were at this mess last night, too! She asked me if I ever experienced mysogynistic behavior. It made me sad to recall so many experiences.