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

Hi! Just recently diagnosed with ILC - just starting journey-in 2 weeks I meet with a surgeon at Dana Farber but have since I've ready ILC is "sneaky" I'm very anxious - I'm 57 yrs - E+,P-, HER-
and 1.6cm - do most breast surgeons treat ILC - seems uncommon and my surgeon is so very young. Thanks for any thoughtsxoxo

Hello, I am in the same shoe as you. My surgeon recommends taking tamoxifens 5mg daily and yearly mammogram. May I ask whether the surgery your doctor is recommending is lumpectomy or mastectomy?

My surgeon/ breast specialists did not recommend any surgery. The radiologist does recommend a lumpectomy based on her training.

My surgeon asked if I wanted a lumpectomy to make sure there is no cancer around that area of concern. I went ahead with it. But even with the lumpectomy, it may not eliminate that increased risk we have as LCIS patients for breast cancer. Still needs to take preventive meds like tamoxifen and frequent screening.

In May 2021, I was diagnosed with invasive lobular carcinoma (ILC) in my left breast and both IDC and DCIS in my right breast. The nodules were so small that it finally took an MRI to confirm the need for a biopsy. Even though the surgeon initially suggested bilateral mastectomies, I followed my intuition and chose bilateral lumpectomies. Stage 1, clean margins and clean lymph nodes. I had 5 consecutive days of radiation.
I’ve been on Letrozole for the past year. There have been numerous side effects from the Letrozole along the way; however, my system seems to be righting itself.
I do both strength training and yoga twice a week, and meditation. Going to counseling weekly. Eating as healthy a diet as I know to do. Have discarded 35 pounds and feel great.
My Mammogram and MRI this year were good. I thank God for where my current health is.

I am pretty much the same as you. ER+, PR-, HER2-. I did a lumpectomy for mine. Clean margins and 1 node removed and was negative. They did and oncotype that showed aggressive cells so currently in chemo and then to radiation and endocrine therapy. I am grade three pleomorphic. Make sure you have a good breast surgeon as clean margins are very important.

I am er+, pr-, her2-. My doctor got clean margins and 1 node that was negative. I am stage 2. My doctor guided my choose as well. She explained that a lumpectomy flowed by radiation is within 3% of having the same outcome as mastectomy and that a mastectomy doesn't guarantee no recurrence as they can never get all the breast tissue. She also explained the risks of mastectomy vs. Lumpectomy. I decided lumpectomy. My oncotype came back high at 34, I was grade 3 pleomorphic, so currently doing 4 rounds of TC then radiation followed by endocrine therapy. Good luck with your decision, I know it is hard.

Thanks so much for your reply - a friend was diagnosed with ILC 8 yrs ago at age 49yrs and she went for double mastectomy but so much has changed and I understand that lumpectomy seems to be recommended. My MRI came back showing nothing in left breast. I meet with surgeon tomorrow and Thurs and hope to soon have more info to share. Takes a village -
xoxoxoxo

That is what they told me, mastectomy used to be standard but a lot changed. I know lobular can hide so I sometimes get nervous about that but it can hide even with a mastectomy so who knows. So personal and so hard. Ask all your questions because you need to feel secure with your decision! That is what matters most.

I was diagnosed with lobular breast cancer almost four years ago. I was also triple positive and because I was Her2+, I had to have chemo.

I had a lumpectomy with clear margins, and radiation. My healthy breast was always clear.

Here I am four years later and doing very well. Hope this helps. ♥️