invasive lobular carcinoma and invasive lobular in situ

@brightlight66 I had understood that ILC does not respond to chemo. I am surprised that it was recommended for you. Did you have radiation also? Was it a single mastectomy or double? What medication are you currently on? Thank you for sharing.

i think they are doing radiation on the 12th of March after they take the pumps out on the 10th. I think he is going to do Hormone Therapy. I am already on chemo, Gammagard, and iron for my leukemia. We will see.......

4 and one half years ago I had Triple negative invasive lobular cancer. I had chemo and it shrunk my tumor by almost half. I had radiation and masectomy.
Ask lots of questions of the doctors and nurses.
Thinking of you and sending hugs.

I had this diagnosis a year ago. I urge you to buy this book. It was given to me by my breast surgeon but you can get it from Amazon. It was immensely helpful explaining treatments and ILC. My cancer was HR+ HERS - so I am on letrezole for five years which is an aramotase inhibitor blocking estrogen which fuels this HR + cancer. My oncotype score was 22 so I was thankfully not a candidate for chemo although my breast surgeon also said ILC doesn’t respond well to treatment. I was stage 1A and there was no cancer in my lymph nodes thankfully. I hope you can get this book which should help you answer questions about treatment. Hopefully your doctors will guide you. Sending hugs.

Judy C. Kneece
Breast Cancer Treatment Handbook, 10th Edition (2022): Understanding the Disease, Treatments, Emotions and Recovery from Breast Cancer

@llthomson My doctor had recommended chemotherapy to shrink the tumor so that I could have breast conserving surgery. At the time, I didn't know that ILC doesn't respond as well. When I just asked for surgery first because I didn't want the tumor in me for 6 months during chemo, he said okay. That's the drawback, you keep the tumor inside, but on the flip side, you don't shrink it. Its' a quandry, what to do? My margins were not clear after the surgery, so the doc said to have adjuvant chemo and then a second surgery which cleared everything. Sometimes chemo works great with ILC and other times not so great. They still don't know and I think my doc just threw everything at the disease. I have found conflicting studies, but the most recent one I found is here.
https://pubmed.ncbi.nlm.nih.gov/40978052/

@llthomson It was a single mastectomy, I had 25 sessions of radiation and now I'm on Anastrozole plus Verzenio. I asked my doc if I should get a double mastectomy and he said, "No, You don't have it in the other breast". It made sense to me and so far all is well and I'm full of life!