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

It's unfortunate that though lobular carcinoma was recognized as a very distinct type of breast cancer, different biologically than ductal carcinoma in the 1940s, we are still left with treatment specific for ductal carcinoma, a cancer with very different growth pattern. People think it's because it's 10-15% of breast cancers and so overlooked. But it still represents more diagnoses each year than ovarian cancer, so the numbers are significant. One of the main problems is that it rarely forms lumps and research wants to be able to identify changes in measureable disease. There are sometimes a few lobular patients included in research for drug approval but the numbers are too small to break out a separate analysis so the effectiveness on ductal carcinoma may not reflect the actual effects seen in lobular.

Go to LBCA Lobular Breast Cancer Alliance website. There is a wealth of information and guidance. You are right: Lobular Cancer presents patients with a steep learning curve. LBCA is the place!

I’m in.

Sorry, yes, I meant ILC for the Lobular Breast Cancer group.

@llthomson sorry, do you mean ILC? I had a lumpectomy for my 7mm ILC tumor plus 5 days of radiation & taking half-dose of Tamoxifen. I was 72 when diagnosed. Every situation is unique.

@pgiggers
Not an easy choice, but what stage you are at, any genetic factors and that sort of thing play into where to have a mastectomy on one or both. I had DCIS, stage 2-grade 3. Genetics BRCA2 mutation. My tumor also had Her2+ growth and all in all i chose a dbl. I was not interested in watch and wait. BUT, i know get all the facts on your diagnosis and possible prognosis if only one is removed.

Have just recently been diagnosed with ICL and they have told me I could do a single or double. I really can’t have a lumpectomy due to having 4 lumps in my right breast. I have met with surgeon and will meet with medical oncologist this week to see what he recommends for chemo or other treatment.

Has anyone had mastectomy for ICL and the cancer came back? I had two different opinions from two different oncologists that a mastectomy is required for ICL.

@vissdoc, you may also be interested in this related discussion:
- Triple negative invasive lobular breast cancer https://connect.mayoclinic.org/discussion/triple-negative-invasive-lobular-breast-cancer/

@lls8000
Thank you for your suggestions. I appreciate your response. I felt so alone with the progression and mutation of my disease. Your links are very helpful.
Wishing you continued good health and blessings.