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!

I’m just a little further down the track than yourself, my diagnosis was mid February and it was the scariest time of my life. I knew nothing about different types of BC and dived head first into learning what I could about what was happening to me.
The beginning is rough. I had anxiety about all the scan results and the waiting for results was the worst part.
Each time a result came through, I thought to myself, answers at last! But it doesn’t happen like that.
I’m 5 weeks post diagnosis, I’ve had a mastectomy to my right breast and still healing from that surgery.
My anxiety has lessened now, the shock of the diagnosis has sunk in, and my treatment plan hasn’t been set yet, I’m seeing the oncologist in 3 days.
For me, reading and understanding ILC and how it works, helps you to advocate for yourself. I’ve asked lots of questions and even having an understanding helps when they give their medical advice. Sometimes I have questioned their answers.
I also reached out when first diagnosed, and was told the anxiety does settle and it gets easier. Where my head was at the time, that seemed impossible, but here I am, 5 weeks out feeling encouraged by the support available, and knowing there is medical treatments around to fight this.
You will get through this stage. Deep down, there is a fighter in there just waiting for the moment when you say to yourself, I’ve got this!
Tiny steps forward. 💗

Thank you all. I had the double mastectomy. They found a 9.8 cm, a 6 cm, and a 6 cm tumor in my little right breast. It had shrunk from a c to an a cup. Also invasive lobular carcinoma in situ. In my left breast 2.2 cm and 6 and 9 mm tumors and LCIS. My breast had shrunk from a c to a b cup. Now I have an infection and on a strong antibiotic. I start radiation on April 8 for 7 weeks on my chest wall and 5 sessions on my lymph nodes… 5 days a week for 8 weeks total. Then hormone therapy… estrogen level was 97%. P—3%. Still in lots of pain. I do have leukemia and immune disorders so this may be why. My red blood counts are really low as are my white blood counts. This is a worry but I have a ton of MDs who are trying to figure me out. But… I try to keep my smile and look at the world with rose colored glasses. During the mastectomies, I had hemorrhaged and after had a code blue for 80 seconds… so I look at the world as a gift. Smiles and happy Palm Sunday.

@gailmarienewton, My dear comrade and friend:

My heart and prayers went out to you upon reading this post...

Yes, life is a gift; thanks for sharing your wisdom and courageous experience to inspire us!

Wishing you all a better journey ahead with faith, hope, love and peace!

Thank you… 🙏