Anyone with invasive lobular cancer stage 4 that has metastasized?

I also had lobular stage 2B in 2013. I had 2X mastectomy and 8 rounds of chemo and 5 years of letrozole. I do not have it in bones but mine returned in gallbladder. I tried Letrozole, Kisqali and fosladex shot. They haven’t worked so now will do IV chemo Enhertu. I did everything I was told to do but cancer has a mind of its own. Sure wish they’d find a cure!!!!!

Did you have mastectomy after your stage 4 diagnosis? May I ask the HER2 status?

Estrogen + and HER2-
Bilateral mastectomy after diagnosis and 6 months on Ibrance and anastrasole

Thank you. I too am diagnosed with ER+, HER2- Stage 4. Mastectomy was never offered. Curious.

I was diagnosed with multifocal sclerotic bone lesions in January 2023. I had breast biopsies, right pos for LCIS. Lymph node in right axilla for carcinoma likely breast. I had FDG PET all negative except for lymph node. Iliac bone biopsy pos for very rare atypical cells GATA pos ER neg. Had FES PET negative except for lymph node and biopsy site. Bone scan negative except for biopsy site. Just had second biopsy (same iliac bone) pos for carcinoma. So 4 months later I'm told I cannot have surgery because of bone mets. I just started letrozole and I'm told I can have targeted chemo, but this is a very slow growing cancer and chemo works on cell cycle of rapidly reproducing cells. Has anyone had mastectomy for lobular carcinoma with bone mets to know if it is a viable treatment alternative?

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?

How are you doing? Is your cancer lobular? Has it spread to other organs? What do they sit for you?

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.

I See Oncologist 5/19. All the tests are to determine what might work. Looks like no chemo from your experience. My sclerotic lesions May still be microscopic. Just found as on 4/26 after bilateral mastectomy. I plan to discuss with doctor. Had surgery at UC San Diego. Now at Cancer Care Northwest in Spokane, Washington. The Kisqali and Fulvestrant will be an attempt at estrogen blocking. Have had DNA testing but not sure if I have the e- cadherin mutation. Is that ESR1 mutation? I did not have ESR1 and could not take new elacestrant pill and they are recommending the Fulvestrant injection.

ESR1 is a mutation selected by use of aromatase inhibitors so its good that you don't have that. BC cells with e-cadherin mutation (majority of lobular) may respond to ROS1 inhibitors like crizotinib (currently approved for NSC lung cancer and being studied for lobular carcinoma). They are or will soon be finished with recruitment for the study in the UK and hopefully data will be reported soon. Study of a different ROS1 inhibitor will be starting in the US soon. Just looking forward to agents targeting lobular carcinoma.