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Has anyone had biopsy positive stage 4 lobolar carcinoma scan negative
I have lobular carcinoma with sclerotic bone lesions. FDG PET, FES PET, and bone scans are negative. 2 bone biopsies, one atypical cells, one carcinoma. I know lobular is "sneaky" but I haven't heard of one where all scans were negative with positive biopsy. Has anyone else experienced this?
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Are you doubting the diagnosis? I know lobular can be hard to scan. I don't know what biopsies in this case might require but perhaps the specimen itself could be retested, or a repeat biopsy could be performed-? Or are there other tests to confirm the diagnosis? What led you to approach the doc and then get the biopsy?
I don't doubt the diagnosis but since lesions are sclerotic (no signs of lytic lesions) I wonder if the negative scans, including bone scan, which suggest inactivity mean the metastatic lesions are indeed inactive at this time. I don't know if this makes a difference in prognosis.
Do you have a doc who is good with lobular?
I have an oncologist who wants me to take a cdk4/6 inhibitor because although lobular is too slow growing for chemo to be effective, that is the current recommendation for any HR+ HER2-. I'm taking letrozole because that makes sense with HR+. I don't know how to find an oncologist who is good with lobular.
Sounds like you have good treatment. Here is an example of a doc who does a lot of lobular cancer, and he has excellent videos (not sure where they are but I watched one live). But it seems like you are doing fine with your current doc.
https://www.dana-farber.org/find-a-doctor/otto-metzger/
Thank you. More resources are appreciated