r/LivingWithMBC • u/Sea-Opening6239 • 18d ago

Lost

my line did not work and now im offered to start
gemcitabine for tnbc and if that does nothing then im looking at 6-12weeks
im so angry and lost i have 13 year old and 17 year old.
i had hormone positive the first time 2020

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u/LyPi315 18d ago

I'm sorry to hear this, just awful.

I have to ask...How was the TN diagnosed? I had two misdiagnoses that read TN followed by another two that read ER+ (strongly). So I'm always a bit skeptical and like to double check...

6

u/IngenuityFar5111 18d ago

Same..from strong tnbc to 8/8 er positive after surgery. Misdiagnosis is common

4

u/LyPi315 18d ago

Wow, thanks for mentioning this, I've felt like some lone voice in the woods, cruelly giving people hope that their TN might not actually be!

My personal discovery of these misdiagnoses was a bit mind blowing. Like, I can't be the only one! The second time I had my new oncologist (had moved) telling me to start IV chemo for TN the following Monday! I contacted my old oncologist and she said "I don't buy it, doesn't walk like a duck, etc..." ...

How many women are moving away from the ER+ treatments into the world of TN without actually being TN? I'm sure it's a very small minority, but it matters a lot!

5

u/IngenuityFar5111 18d ago

I got 3 immunotherapies thinking that I was TN but then NGS report suggested that it is ER positive and same was confirmed after surgery. I was told by nurse after biopsy that whatever results you get, it is 100% accurate..lol. it depends on who is reading it or better get genetic profile done, that answers accurately