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Aug 2, 2008 06:40PM
Kleenex--thought of something else--it's all sort of coming back to me now (the past year is sort of a blur!). The surgeon orginally pushed for lumpectomy for me, even with the ILC. It wasn't until we got the surgical path and saw that there was extensive pleomorphic ILC was in the breast, that she brought up the bilat mast. And even then, she said she was recommending that b/c the LCIS was pleomorphic, not classic LCIS. So, in my case, my surgeon was conservative. She is the head of the breast clinic at a major university teaching hospital.
Also, saw you found the surgery board! Interesting discussion over there about differences in countries in mast rates.
One other thing I'll mention, then I'll stop babbling, is that I've found many women, especially those who don't have bc, think that having a mast reduces your chance of a new primary by 100%. My surgeon told me the rate was 95%, which wasn't good enough for me, having had a 1% chance of getting bc at age 38, then getting a weird subtype that accounts for .5% of all bc. So, there's this notion that if you have a lump/rads, you're not doing enough to avoid a new primary. My take on it is, a new primary isn't going to kill me, but I might get mets from my current primary, and that's what concerns me more than a new primary tumor.
Stage IV Pleomorphic ILC, initially diagnosed at age 38
6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH)
7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel
12/27/2007 Whole-breast: Breast, Chest wall
3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+
5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap
2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+
2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel)
6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+
7/1/2018 Ibrance (palbociclib)
7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH)
7/17/2020 Xeloda (capecitabine)
Faslodex (fulvestrant), Zoladex (goserelin)