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

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.

Lobular makes up about 15% of breast cancers. The LBCA (Lobular Breast Cancer Alliance) is working on increasing awareness and research. I'm going to the International ILC Symposium in Pittsburgh next week where latest research into scanning and therapy will be presented. A lot of people are working towards making treatment and imaging specific for lobular

Wishing you well. What is LBC?

I'm not sure who or what qualifies for this particular test, but if it works, we should all have access to it. We have to be our own health care advocate, just because the doctor doesn't want to give it to you, check your rights and see if your insurance will allow it. Or find a doctor who will give it. Not sure what the injectable is, be sure to check with your other doctors if you have any kidney or liver issues. I'm in the same boat, just starting to look into this

My doctor found the mass doing my annual physical. Biopsy was yesterday, pathology report came today. LBC. Scary. I'm 74 so I got away without it for a long time. But, it caught me. Haven't spoken to the oncologist yet about treatment options. I'm assuming radiation and maybe chemo. I'll find out soon enough. DAMN! No symptoms at all. Glad to have this forum.

Thank you so much for your involvement in this. Please post what you leaned or share a link if it will be videoed.

Lobular makes up about 15% of breast cancers. The LBCA (Lobular Breast Cancer Alliance) is working on increasing awareness and research. I'm going to the International ILC Symposium in Pittsburgh next week where latest research into scanning and therapy will be presented. A lot of people are working towards making treatment and imaging specific for lobular

Good morning my lobular sisters. Love this subject about imaging and how we are the unfortunate gals whose cancer is unlikely to show up, yet they lump (no pun intended) our treatment right in with ductal as if it's going to work. Are there any large groups out there advocating for more accurate imaging, like the MRI, for lobular cases? We deserve a fair shot at being detected early like everyone else! Mine was detected in 2012 and dismissed, then diagnosed in 2017 (same exact area) followed by a DMX. Maybe all of those million$ they raise for awareness could be used to help us? I think we're all pretty aware now. The 10 to 15% of us need to be acknowledged. 😤
I am also in a position I am very angry about, I have no oncologist. I moved and I interviewed one at Florida Cancer specialists and she did not know much about lobular. The one before that also didn't know much. I am weary of educating people with medical degrees on how lobular is different.
When I get a little more settled in my new home, I think I will be doing a lot of research and contacting some big names and groups with big money to see what can be changed. If they need a louder voice, I would invite you all to make some noise too.