borderline Her2+

arolsson

Hi all

I'm stage 4, diagnosed at IIIC 7 years ago as ER+ PG-HER2- then and same 2 years ago when I was diagnosed at stage IV (lymphs, liver, bones). I have been treated with the usual lineup (pax, nab-pax, navelbine, capecetabine...) and more recently the targeted therapies against HER2, since a year ago my liver biopsy came back HER2+. Failed miserably on everyone's darling Kadcyla and was up for a study drug SYD-985. Now a lab in Holland says I'm NOT HER2+ but HER2- so not a candidate for the study (Which like Kadcyla is an anti HER2 conjugate). Now back to the system wide chemos starting with Halaven on Friday. The oncologist is still adding herceptin since he says I may have 10% HER2+ tumor cells.

Am reading up on the frequency with which cancer biology changes but also how much of an art form these HER2 designations seem to be. Did I waste 8 months giving my cancer a free pass or is the Holland lab too stingy in their classifications so their study drug will get new results? I feel about the same as when the radiologist explained to me that the reason I managed to have an 8 cm large tumor in my breast but a NORMAL mammogram is that ¨yeah, a mammogram is never a sign that you don't have breast cancer, most of our new patients have normal mammograms." Hashtag dense breast tissue : )

Anyone else HER2+ borderline?

Just took a 6 week chemo break waiting for this study to get underway. Went to mexico and had a blast. Feel like myself for the first time in 2 years. So I guess it wasn't all bad. Hope my tumors weren't partying as well.

GlobalGal

Dear Arolsson,

I am also stage 4 and HER2 borderline, but mainly because I did not have enough tissue remaining after surgery to run additional FISH tests (metastatic breast cancer found only in neck's 3 central lymph nodes during thyroidectomy and nowhere else--so far.).

I suppose I'll have to wait until breast cancer appears again to confirm my HER2 status.

I am also unsure what kind of breast cancer I have ("possibly lobular" the pathologist said, but did not put in writing).

Without definitive HER2 status or even type of cancer, I am unsure about most everything I read about various treatments, medications, trials, etc.

I had 12 years of annual normal mammograms (other than dense breast tissue). Breast ultrasounds, MRIs, and PET scans have not yet revealed a primary breast cancer.

Your trip to Mexico sounds very therapeutic and fun!!!

GlobalGal

arolsson

the period during diagnosis is the worst! Have they scanned the rest of your body? My recurrence of breast cancer was on the left side, in my neck and left chest wall and under my arms, but not in my left breast. THe needle biospsies kept having to be repeated and then got LOST so they vacuumed out all the lymph nodes under my arm and away we were to the races. Hope your cancer stays locoregional, don't hesistate to keep in touch if I can help with anything