Anyone with invasive lobular cancer stage 4 that has metastasized?

Posted by michaele74 @michaele74, May 7, 2023

I had invasive lobular cancer in March 2009. Had a lumpectomy and took aromasin for 5 years. I was told I was clear. It came back and was detected and finally diagonosed in 7/2022. It is stage 4 and crossed from 5"oclock right breast to left lymph nodes. I took Ibrance and anastrozole until 2/6/23. Had double mastectomy and 23/31 left lymph nodes were positive for cancer. New FES PET scan indicated activity in my bones. Has any doctor or patient experienced anything like this?

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eku | @eku | May 13, 2023

In reply to @michaele74 "How are you doing? Is your cancer lobular? Has it spread to other organs? What do..." + (show)

It is lobular, currently bone mets only. I'm not sure what you mean by the last question.

mjwhearts22 | @mjwhearts22 | May 14, 2023

In reply to @jmh22 "ESR1 is a mutation selected by use of aromatase inhibitors so its good that you don't..." + (show)

I’m so sorry you are going through this! I was diagnosed with stage 4 metastatic lobular carcinoma a year ago and had a bi-lateral mastectomy last November. Finished chemo last month and headed to radiation in 2 weeks. This is an insidious disease because it usually not detected until it’s stage 3 or 4. It’s been a very rough road though while the physical part is destructive to the body, the mental and emotional “side effects” can be just as devastating. It can be difficult to do, that’s for sure, find your center and try to remain grounded in that. Best to you!

jmh22 | @jmh22 | May 14, 2023

In reply to @mjwhearts22 "I’m so sorry you are going through this! I was diagnosed with stage 4 metastatic lobular..." + (show)

Thank you for sharing. Can I ask where you got mastectomy? That's been my biggest battle. I'm hoping U Penn but if they won't I will continue the battle.

mjwhearts22 | @mjwhearts22 | May 14, 2023

Actually, I live in Portland, Oregon.

eku | @eku | May 15, 2023

In reply to @mjwhearts22 "I’m so sorry you are going through this! I was diagnosed with stage 4 metastatic lobular..." + (show)

Thank you for sharing your experience. May I ask what your subtype is? ER/PR and HER2 status? Is it oligometastatic?
How are your follow ups?

Thank you!

timely | @timely | May 15, 2023

In reply to @eku "Thank you for sharing your experience. May I ask what your subtype is? ER/PR and HER2..." + (show)

Couldn't find definition of oligometastatic.

eku | @eku | May 15, 2023

In reply to @timely "Couldn't find definition of oligometastatic." + (show)

From National Cancer Institute:
"A type of metastasis in which cancer cells from the original (primary) tumor travel through the body and form a small number of new tumors (metastatic tumors) in one or two other parts of the body."

Basically if one has 1-2 metastatic sites, then it's called oligometastatic disease. Think of it as a subtype of Metastatic Disease.

michaele74 | @michaele74 | May 16, 2023

In reply to @eku "Thank you for sharing your experience. May I ask what your subtype is? ER/PR and HER2..." + (show)

I am Estrogen + and HER2- Got a call today. The MRI’s are showing thousands of pen point size tumors throughout my bones. Bad news. On 5/19 my Oncologist will start Fulvestrant and discuss other drug options. Radiation will be delayed. It is not microscopic which means it is not slow growing but aggressive!

jmh22 | @jmh22 | May 18, 2023

In reply to @michaele74 "I had invasive lobular carcinoma inMarch 2009 at 5 o’clock on right breast. No lymph node..." + (show)

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.

lindahco | @lindahco | Jun 7, 2023

I was recently diagnosed with metastatic lobular carcinoma just had a second surgery. They removed 14 lymph nodes. It looks like 14 were affected and I’m just scared and wondering what others have gone through and I just need some hope.