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