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Sep 18, 2016 02:03PM
Sep 18, 2016 02:40PM
Kaya Rose, I was diagnosed with stage 1 ILC this year after I had a prophylactic mastectomy of my right breast. At the same time, I had a mastectomy to remove what they thought was a 3 cm lesion in my left beast (nipple to chest wall). Images of the left (us, 3D Mammo and MRI were showing a large invasive cancer but 2 biopsies showed high grade DCIS and LCIS, hyperplasia, sclerosis, you name it). So they didn't know what we were dealing with. Final answer would have to come after surgery.
I had had extremely dense breasts with stable calcifications (BiRad 4). The 3D Mammo showed nothing on the right side, but the MRI showed a lesion which the BS was not worried about at all--a fibroadenoma, they said. Because my Mom passed away from recurring, two primary metastatic breast cancers, I opted for prophylactic on the right.
Post surgery, the findings on the left were 6 cm of grade 3 DCIS, LCIS and cancerization of the lobules, embedded in a large sclerotic (benign) lesion, less than 1 mm margin in at least 2 spots, suspicion of micro invasion, isolated tumor cells in 1 of 3 nodes (highly ER positive; PR 10%; HER 2 -ve).
What's more relevant to your question, on the right side they discovered a 0.9 mm Grade 2 ILC, highly ER and PR +ve, HER2 negative. Followed up with axillary dissection on right side: 0/14 nodes. Yay! I was smart (in decision) AND incredibly lucky. I've seen way too many stories of stage 3 and stage 4 ILCs at original diagnosis. Oh I had also had a PET-CT scan no contrast, and there was mild uptake in left side but not on right ILC side.
Because Oncotype scores were in the low spectrum on both sides, no radiation or chemo were recommended (1 RO, 3 MO opinions). Only Tamixifen.
Insurance covers prophylactic mastectomy by law. Your body, your choice.I hope the long details are helpful. Good luck.
1/21/2016, LCIS/DCIS, Left, 6cm+, Stage 0, Grade 3, 1/3 nodes, ER+/PR+, HER2-
1/21/2016, ILC, Right, <1cm, Stage IA, Grade 2, 0/14 nodes, ER+/PR+, HER2-
Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)