Lobular Breast Cancer: Let's share and support each other

Lobular cancer is less responsive to chemo but is used given certain criteria. I would get a second and third opinion to see what options you have.

Diagnosed in June, 2025. I have Invasive Lobular Carcinoma with lymph nodes involved. Has anyone had chemo before mastectomy surgery? And then radiation after the surgery. I feel worried about doing the chemo first. Thank you all

This is my current pathology Stage IA (pT1c, pN0, cM0, G1, ER+, PR+, HER2- Of my latest tumor. I didn’t have lymph node involvement either time.

I know you had an early stage of breast cancer, but was it aggressive in terms of the type of ILC? I've been told that so much plays into recurrence beyond stage, such as lymph node involvement, type of ILC, levels of estrogren/progesterone, etc... I ask because I too had stage 1a and I am taking an AI, for 2 years now. I did have a mastectomy. Very grateful I made that decision because the final pathology revealed other things that were never caught in my initial biopsy or MRI/Ultrasound/Mammogram - to include ADH, LCIS; and all of this could have played a significant role in recurrence. I did not have chemo due to low ONCO DX score of 10. I was 52.5 years of age at diagnosis.

I was on AI for 7.5yrs which I asked to go on longer because I read some study that it could be helpful and I tolerated letrozole very well.
I was 48 when I was first diagnosed. 12 yrs ago they lumped lobular cancer in with all cancers and prescribed chemotherapy. Now they know chemo is not helpful for lobular- so you newly diagnosed have that going for you!

@moloney1231

Did you have radiation and take an AI for 5 years?

ILC usually gets one through the 1st five years cancer free

Were you over 70 when you had your lumpectomy?
Thank you for this information.
I am ILC 1B and coming off Letrozole after 2 1/4 years and have to decide what to do next.

There are absolutely no right answers as everyone is different.

That leads us to make tough decisions.

I had stage 1 invasive lobular with lumpectomy/ radiation. It came back 12 yrs later. 2nd time had double mastectomy. As I have said before I wish I had the mastectomy’s the first go around. But it is a personal decision.

Anyone chose lumpectomy instead of mastectomy for stage 3 invasive lobular? And has the cancer returned? Thank you for sharing.

Hang in there....life can only get better! I agree with a previous comment to see another oncologist in your area - while they have the same tools in the tool kit they might chose a different approach or select a different med for you. To be honest, I would look for a second opinion from two ends of the spectrum; one from an oncologist who has been practicing a long time (these days you can google them and get info about length of time practicing, where they got their degree, specializations, etc) and another (three opinions!) who recently began practicing. I say this because the long time physician should have seen just about everything and helped manage a lot of conditions and the young person because they are fresh out of training and will be up on the most recent advances or thoughts in how to manage BC. Although physicians are required to complete continuing medical education that don't always embrace new thoughts the way the young folk do. So take a deep breath, step into the light (shut down those dark thoughts), and regroup; find the support you need by seeking second opinions. I will you well...

@lifetravler
Thank You for the hug. I send You a hug as well
COG81