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

Hello Dolphin3:

Wow! You and I are rare birds--we both are ILC TNBC. Our cancer is less than 1% of all breast cancers.
I like your suggestion to ask questions! That's the best way to handle these tough treatment decisions.
Sending good thoughts your way!

Hello mjorskir:
I don't know your stage or HR/HER2 status so I will share my status.
I am ILC triple negative. Dx in May 2022 as stage 3B. At the time the doctor stated that she believed I had more cancer and was a higher stage than her clinical exam or imaging revealed. I started with neo-adjuvant chemo + pembrolizumab, then mastectomy, then 33 sessions of radiation. The neo-adjuvant chemo did very little to the large tumor that had sprung up in my breast.
After radiation I was on capecitabine as an adjuvant (post mastectomy) chemo.
By April 2024 I was metastatic with mets to lungs, lymphatic system, retroperitoneum. Now I am on sacituzumab govitecan (Trodelvy). It is for metastatic triple negative breast cancer. It is the only chemo that has apparently stopped cancer growth so far.
ILC is tricky because it grows as very thin lines or strands. These can be difficult if not impossible to see on imaging. Eventually the strands group together and form a tumor but by that point the cancer has been growing and spreading insidiously for some time.
If the cancer has spread to the lymph nodes, it has probably spread more to than your breast and lymph nodes. I am sorry to say that. I am not a medical person, but that is what I have read in medical journal articles.
You may wish to research the NCCN guidelines regarding ILC treatment. These are available online. These will be the guidelines that your doctor follows--they are the 'bible' for cancer treatment. The NCCN guidelines for ILC are the same as for certain other breast cancers as there is insufficient research on ILC to establish its own set of NCCN treatment guidelines. The lack of NCCN treatment guidelines specifically for ILC is one of the problems.
Immunotherapy, such as pembrolizumab, seems to have helpful results. That is an immunotherapy, not a chemo. Your oncologist likely will want to include it in your treatment.
If you are HR or HER2 positive you have more treatment options.
Do your research, read medical journal articles (available free online), prep some serious questions for your doctor. Everyone is different and my situation may not be applicable to you. I wish you the very best in these tough decisions.

Hi,
In 2021 diagnosed with5.8cm triple negative lobular invasive cancer. They did chemo first it shrunk the tumor then surgery then masectomy then radiation.
Glad they did chemo first to stop any cancer cells floating around as I must have had tumor for awhile .I was aggressive could have had lumpectomy but felt safer going masectomy route. They are still learning about lobular and TNBC every person's story is different don't be afraid to ask questions of Drs. so you can be reassured. Sending hugs.

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.