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

I am interested

Is yours ++- (HR+, her2-) and what stage it is ? I diagnosed invasive lobular ++- carcinoma stage one in 2019. My oncologist in Stanford arranged surgery and radiation, no chemo. Their data shows no difference to have chemo or not based on my situation.

@llthomson and @moloney1231 As I understand it, they don't yet have a lot of data for lobular. My diagnosis was the same as yours. I do wish the docs had sat down to explain all the options, including the side effects of being on an estrogen blocker. That point is thrown out when you're feeling relieved because it's only a lumpectomy. A good friend (who had ductal) and I discuss this. These meds have systemic effects. Joints are aching that never ached before. There is not enough eye drops in the world to make my eyes moist. I would have liked a flow chart with possibilities.

When I was having my stereotactic biopsy, I got talking with the nurse. Her mother had lobular but died of something else. The nurse (probably in her 40s) had lobular and had a double mastectomy. gulp. I am in my late 70s and wonder if the doctors felt comfortable not being more aggressive because it's likely that I might not be alive in ten years (My health was excellent before this) Now more than one expert is saying that Mammoprint and Oncotype (sp?) may not apply for lobular. I'm grateful for this loop that allows us to share our experiences.

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.