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

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

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.

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.

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.

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.

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

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?

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

Thank you. I will reach out.

@southgawalker, I'd like to add my welcome. I moved your posts to this existing discussion in the Breast Cancer support group.
- Lobular Breast Cancer: Let's share and support each other https://connect.mayoclinic.org/discussion/lobular-breast-cancer/

I did this so you can read previous posts and connect with other post-menopausal women who have LCIS who can share their treatment experiences.

This discussion will also be of interest to you I think:
- LCIS: What treatment(s) did you choose? https://connect.mayoclinic.org/discussion/lcis-and-double-mastectomy/

Have you considered getting a second opinion?