Is Invasive Lobular Breast Cancer Less Common?

I was diagnosed with ILC, clinical stage 1A, HR+ Her2-. 5mm mass in right breast. Had lumpectomy and reconstruction. 2 lymph nodes removed. 1 had isolated tumor cells. 2 weeks post op. Waiting on lymph node results to see if I have to have chemo. Radiation for sure.

I had ILC in 2019. Had lumpectomy and radiation. Was on letrozole for 5 years. Recurrence found and I just had a double mastectomy with reconstruction. Due to location of the cancer which was Stage 1, grade 1, est + and HERS -, there was a clear margin. Waiting on the genomic test on the cancer to see if any chemo is beneficial. If not, I'll go right to targeted radiation and be put on a hormone suppressant for likely a decade.

I have ILC 6/2024 diagnosis. 2/25 mastecomy bilateral. Now on letrozole(femara) and Lupron injections (I did a 6 month cinical trial of ARV-471 drug)

I was diagnosed with ILC 2/25, 3.7cm in R breast. Lumpectomy wasn't an option due to size.i was on the fence about doing single or double mastectomy. I decided on double and had it 2 weeks ago. It's such a good thing I did because the Stanford pathology found I had ductal cancer in my L breast. The doctor said that is extremely rare.

Results back today. Oncotype score was 6. No chemo.

Good to do the oncotype. Great news.

I have lobular cancer. The original mass was at the bottom of my breast, beginning to invade the chest wall. Even with a full mastectomy and radiation, I've ended up with spinal Mets. Well controlled for now on fulvestrant and Verzenio.

I had ILC, did a lumpectomy with clear margins, not in lymph nodes. I did 16 rounds of prone radiation and now on anestrazole. I just had my first mammogram and all was clear. I have some swelling occasionally and wear a compression bra when it flares up.

In January 2024, I also had ILC in right breast, 2.6 cm, IIA, HR+, HER2-, no lymph node involvement. Had lumpectomy and breast reduction at the same time. Mammoprint came back ultra-low risk of recurrence. Had 25 radiation treatments and doctors wanted to put me on anastrozole in spite of not being sure of its benefit to me. (I will be 80 next month.) Due to other issues and lots of research, I decided to forego the AI. My husband and daughters all agreed that I shouldn’t do it. Each of us different and have to weigh the treatment options for ourselves. By the way, my doctors were ok with my decision. My first mammogram came back good.

Yes. 5mm mass, smaller one and 2 lympnods. Mastectomy 3/15. Complications with an expander. Start radiation therapy July 8th for 5 weeks. Taking Letrozol for hormone positive.

Yes, ILC diagnosis Oct 2021. Left mastectomy, radiation, Onco score low but was put on Xeloda because of 2nd cancer (COLON). Now on anastrozole. Cancer stable.

Great.

Me! 42yr, no family history. Diagnosed May 6, 2025, stage 1, had dbl mastectomy June 20. Tumor on MRI showed 4cm, but after mastectomy it measured 8.6cm! No nodes and clear margins. We have a meeting this week with oncologist to discuss treatment. I’m scared and nervous.

Tracey. Hope your appointment goes well. Sometimes it can be environmental. Did they test you for the cancer gene? If you're HR- it is a little less complicated than HR+. Sometimes they look at family and relatives who have other types of cancer also.

Oh, I mean HER2 + or -.

Hi Martha, I am HER2 - and no cancer genes found when we did the genetic testing. Environmental? What do you mean by that?

Diagnosed May 1 with ILC. DMX June 10. ER/PR + and Her 2-. Oncotyle 4. Tumor was 3.2 cm. Stage 2. Ki-67 11-15%. No lymph node involvement. They found two other small tumors never picked up on ultrasound, MRI or mammogram. I am 51 and perimenopausal. They want me to start Lupron and Anastrozol July 28th. I am on the fence.

Invasive lobular carcinoma (ILC) accounts for about 10-15% of breast cancer diagnoses, making it less common than invasive ductal carcinoma (IDC), which represents roughly 70-80% of cases. While it might seem like fewer people in support communities have ILC, there are many patients navigating this diagnosis who can share their experiences and connect with others facing similar journeys.

I have invasive ductal and lobular but more of the lobular.