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Anyone with invasive lobular cancer stage 4 that has metastasized?
Breast Cancer | Last Active: Jun 8, 2023 | Replies (25)Comment receiving replies
That's a lot to go through. The sclerotic lesions were found first. I live in Buffalo but have been going to Cleveland Clinic. They won't do surgery even for bone only mets so at my request they are referring me to Penn State. There is a study coming up with a drug that targets the e-cadherin mutation that they think is the hallmark of lobular carcinoma. You have to fail estrogen blockade. I don't know where you are being treated but I would talk to them about it because lobular doesn't respond to chemo, even targeted chemo the way ductal does.
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I See Oncologist 5/19. All the tests are to determine what might work. Looks like no chemo from your experience. My sclerotic lesions May still be microscopic. Just found as on 4/26 after bilateral mastectomy. I plan to discuss with doctor. Had surgery at UC San Diego. Now at Cancer Care Northwest in Spokane, Washington. The Kisqali and Fulvestrant will be an attempt at estrogen blocking. Have had DNA testing but not sure if I have the e- cadherin mutation. Is that ESR1 mutation? I did not have ESR1 and could not take new elacestrant pill and they are recommending the Fulvestrant injection.