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Sep 12, 2019 12:38PM
Sep 12, 2019 12:41PM
windingshores, I'm in a similar boat. My tumor had some tubule formation (which is almost entirely non-existent in ILC), but had complete loss of E-Cadherin. I had neo-adjuvant chemo (not because my case was locally advanced, but because I was on a clinical trial - control arm - that required neo-adjuvant treatment). I had good response, but had some cells left after chemo. Pathology on the pre-chemo and post-chemo is basically the same - high score for tubules (3), intermediate for nuclear pleomorphism (2) and low mitotic (1), giving me an overall grade of 2. From what I read this breakdown is very common for ILC, and it's almost always Grade 2. What drove yours to be Grade 3?
I never had an oncotype, but my MammaPrint was High Risk, which is why I was admitted to the neo-adjuvant chemo trial. My Ki-67 was 40%. so very high for ER+/PR+ cancer.
In the end, pathologist classified my tumor as "invasive mammary with lobular features". So, I feel like I should be an ILC. However, my oncologist was not convinced, and said that with the way my tumor imaged and felt (a very distinct lump, also very visible and distinct on all imaging), she would guess IDC. She didn't put too much weight on E-Cadherin loss.
At the very beginning, when I was doing chemo, my oncologist said that treatment is the same for IDC vs ILC. The chemo was working (had sequential MRIs to monitor tumor response) and I didn't question that (ok, I did, but at that point I felt I needed to have treatment FAST, as my tumor appeared very quickly). After surgery I chose (with her recommendation) the most aggressive anti-hormonal treatment (ovarian suppression with AI).
For a time this was all so raw, and I wanted to put the thoughts about specific tumor type I had in a far and dark corner of my mind. Now I'm 2 years post DX and 18 months post surgery, and I'm ready to face this again.
Is your concern specifically with the duration of Femara? I am very early in the hormonal treatment timeline, but I got an impression that if I decide to do 10 years of Femara, my onc will be very supportive. I'm just thinking "I hope I make it to 5 years", you know? I'm staying appraised as much as I can on research on lobular. There is currently a clinical trial for metastatic lobular cancer, and I feel this may be the first one where they concentrate specifically on this subset of BC, and most importantly, the loss of E-Cadherin in ILC cells (the trial also includes gastric cancer patients, and gastric cancer's hallmark is E-Cadherin negativity). However, it's for metastatic patients, and only phase 2, so I feel like we are a long ways away from having a drug that can be offered specifically to early stage ILC post surgery/chemo/rads, other than AI.
8/31/2017, IDC, Right, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2-
9/15/2017, DCIS, Left, 3cm, Stage 0, Grade 1, 0/3 nodes, ER+/PR+, HER2-
9/28/2017 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel)
2/22/2018 Zoladex (goserelin)
2/27/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
2/27/2018 Mastectomy: Left, Right
4/4/2018 Femara (letrozole)
8/20/2018 Prophylactic ovary removal; Reconstruction (left): Saline implant; Reconstruction (right): Saline implant