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Apr 21, 2019 07:06AM
I was diagnosed with LCIS in 1991. No one really knew what to do with me. I saw several doctors, sent my slides all over the country for opinions, etc. There was no consensus. Of course, we knew a lot less about breast cancer at that time. Tamoxifen trials were just going on for high risk patients and I was urged by an NCI-affiliated hospital to go on tamoxifen for several years to avoid any further issues. After reviewing all of the then-available material, I pulled out of the trial before starting the meds. Fast forward to 2003 -- I was diagnosed with invasive lobular cancer. My breast surgeon, who was the best in the area at the time, said something like: well, you won the lottery. The odds simply fell out against you. Her comment at that time was that with LCIS, you have a 25% chance of eventually developing invasive lobular cancer. That was me. I had no family history of breast cancer.
I can't tell you what to do, but I can tell you that if it was me, today, I would probably have taken the tamoxifen to increase my chances of never developing invasive breast cancer. In 2003, I had a bilateral mastectomy, ACT chemo, radiation, and I ended up on tamoxifen for two and a half years before having a recurrence to a polyp on my cervix (weirdly found during a routine gynecological exam.) I had a complete hysterectomy and have been on letrozole since 2006. I may or may not be having a progression now -- still to be determined; nothing has shown up on scans yet.
Considering my history, you might want to consider treatment at this time. This is the gift that keeps on giving.
11/2003, ILC, Left, Stage IIIC, ER+/PR+, HER2-
6/2006, ILC, Stage IV, metastasized to other, ER+
5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2-
8/1/2019 Ibrance (palbociclib)
Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap
Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap