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

I'm 2 weeks in with a diagnosis of Invasive Lobular Carcinoma. According to my breast MRI, mammograms and ultrasound - it appears to not have spread. The surgeon wants to do a lumpectomy and radiation followed by an Aromatase drug. However, the medical oncologist wants a Cerianna Pet Scan . Has anyone had this done or heard of it? The breast surgeon never mentioned it.

thks for the 'hug.' started treatment for metastatic ILC Oct 2024. all good. great team of docs that I've been working with since 2017. i'm not hopeless or sad or angry ... i deal with the facts and keep my sights on the horizon.

reaching out to metastatic ILC specifically since it is less common. while scans can highlight mets in organs & bone, scans of peritoneum (in my experience) don't give a tangible result. tumor markers are not an exact science. ...so, to the metastatic ILC gang, let's compare notes and check-in once in a while.

I am sorry your journey went “there”. You are absolutely not alone on connect. There are quite a few of us living with advanced cancer, some have been for some years, some with minimal residual disease. All to say, this is not hopeless, none of us have an expiration date stamped on the bottom of our feet. To search out some of these hardy souls you can enter “metastatic” into the search of breast cancer page, here is a link to that.
https://connect.mayoclinic.org/group/breast-cancer/
Has your doctor given you a plan for moving forward?

2 weeks ago diagnosed with invasive lubular carcinoma. I've now had all the tests and in 2 days im going to oncologist to see what they think is the bests treatment for me. The problem is I won't go near chemo, radiation or hormone therapy because of the side effects. I cannot bring myself to doing that. I'm sure people will take issue with that but i just can't go through anything like that. In 2 days I will know stage or if its in Lymph nodes and all that good stuff. Btw, there are reasons I won't go near chemo, radiation or hormone therapy up and beyond the already known reasons. Mine go a little deeper as to why there is no way. I'll check back in once I have the dr. appt in 2 days.

Hello ILC team mates. Any current members with metastatic ILC? My original go-round was in 2017-18. This time around the ILC is in my mesentery/peritoneum and was discovered Sept '24 when the cancer caused a blockage in my small intestines.

Surgery went perfect my doctor did a fantastic. Going for postoperative in a couple days. Pain was not bad, the drains are a pain and sleeping on back. We will go over biopsy hopefully just hormonal treatment. Thank you for asking.

@joriegrace, how did surgery go? How are you doing in recovery?

Does anyone have the pleomorphic lobular carcinoma? I understand it is rare and only about 1% of breast cancer patients have this form. Have read many abstracts on the pleomorphic lobular carcinoma and it looks like this outcomes are not good as it can spread to other organs.

Yes , early stage but multifocal and PNI positive.
Recovery from surgery went well.
Oncotype with a score of 16 no chemo nor radiation.
On Tamoxifen since August 2024.
Yes , I know leave worries for tomorrow but it's not that easy.

Hi, yes I am doing double mastectomy on Feb 18
No reconstruction I am too old to go through that. Hopefully the Oxoco test comes back good. Then no chemotherapy just stay on Letrozole. How was surgery Char?