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Jan 15, 2019 05:38PM
ladinred-- I am sorry you are dealing with this, so soon after you treatment ended last summer...oftentimes lobular has spread but it's not been detected at the time of primary diagnosis.
Be sure that your PET scan has a CT component, and let the radiologist reading the scans know that you have lobular MBC and to please look for thickening and stranding, especially in the ovaries/Fallopian tubes/peritoneal regions. Lobular has a much greater propensity than ductal to metastasize early to those areas (and especially to bone--have you had a bone scan???) and when lobular metastasizes it frequently forms thin net/sheets/webs of cells more than the typical lump or mass that ductal cancer forms.
I'm glad to hear that you are having liver biopsy-- it's unusual that lobular spreads early to the liver-- not unheard of, but it's not the common metastatic pattern for lobular. It will be good to know if you have a mixed ductal/lobular cancer, or if your lobular has mutated to ER- or HER2+...(ER- and HER2+ lobular are both more likely to spread to liver and lungs than ER+/HER2- lobular...) The biopsy will be very helpful in determining characteristics. Are you also sending it for genomic sequencing (Foundation One) as well as the more usual histologic analysis that the local pathology department will do?
Please let us know what you find out, and what you decide to dog or your treatment. Weare here to provide support and help answer questions...
Breathe. Try to stay focused on what you know and not let your mind go to crazy places.... It will feel more manageable once you have a treatment plan in place.
De novo stage 4 May 2015 ILC, pleomorphic, Luminal B. Mets to bone/marrow, ovaries, peritoneum, omentum and colon. Primary was ER+/PR+/HER2- but mets are ER+/PR-/HER2 equivocal; mutations detected: CDH1, TBX3, NTRK3, ALK, EGFR exon 20 insertion
5/2015, ILC, Left, <1cm, Stage IV, metastasized to bone/other, Grade 2, ER+/PR+, HER2- (FISH)
5/31/2015 Femara (letrozole)
6/1/2015 Ibrance (palbociclib)
9/7/2018 Xeloda (capecitabine)