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Anyone with invasive lobular cancer stage 4 that has metastasized?
Breast Cancer | Last Active: Jun 8, 2023 | Replies (25)Comment receiving replies
I had invasive lobular carcinoma inMarch 2009 at 5 o’clock on right breast. No lymph node involvement. Had lumpectomy and 6 weeks radiation. Took aromasin for 5 years. Cancer came back and first noticed something January of 2022. It was June 2022 diagnosed as Stage 4 invasive lobular carcinoma of right breast metastasized to the left lymph nodes. (Right lymph nodes seemed blocked from previous radiation) Took Ibrance and anastrazole until February 2023. 6/2022 bone scan was neg. 11/2022 FDG PET/CT was neg except for right breast. Had bilateral mastectomy 2/28/2023. Removed 31 lymph nodes/23 positive for carcinoma. FES PET/CT scan April 26 indicated multiple sclerotic bone lesions significantly greater than baseline of 1.5 ? FDG PET/CT shows lesions. (5/8/23) Bone scan 5/12 2023. MRI of brain on 5/11. MRI of pelvis scheduled 5/14, MRI of cervical and lumbar spine scheduled 5/16. Need 6 weeks radiation and probably Kisqali and Fulvestrant as treatments. I am in Spokane. Where are you being treated? Did you find the sclerotic bone lesions before the lobular breast cancer?
Replies to "I had invasive lobular carcinoma inMarch 2009 at 5 o’clock on right breast. No lymph node..."
The sclerotic bone lesions were found first, and that led to a search for the primary. First bone biopsy neg, second positive. I have a lot of sclerotic lesions. I have also had many injuries in my life resulting in broken bones in pelvis, ribs, both arms. In addition, lesions were found in 2020 on MRI but they felt that they look different now and I did have a positive biopsy. But this is going on 6 months. No pain or other symptoms. With bone only mets, and lobular carcinoma that responds poorly to chemo (particularly with low score), I am looking to have mastectomy, nodes and radiation. My MammaPrint index is 0.127 and that is the primary, but the bone biopsy that was positive was also ER+. Thoughts are changing in terms of removing the primary but there is more data in support every day. I want to be around long enough to benefit from newer agents that are being studied for lobular carcinoma.
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That's a lot to go through. The sclerotic lesions were found first. I live in Buffalo but have been going to Cleveland Clinic. They won't do surgery even for bone only mets so at my request they are referring me to Penn State. There is a study coming up with a drug that targets the e-cadherin mutation that they think is the hallmark of lobular carcinoma. You have to fail estrogen blockade. I don't know where you are being treated but I would talk to them about it because lobular doesn't respond to chemo, even targeted chemo the way ductal does.