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

Hello Tamworth, I was diagnosed with ILC a couple of years ago, I had a lumpectomy, 5 sessions of radiotherapy & am now on Anastrozole. But to me it has become quite apparent that the approach/treatment to ILC & DLC seems to be the same. It seems there is not enough research done on LBC and therefore the treatment is the same

Absolutely!!! Great idea😊

I have just been diagnosed with ILC, and this is the first time on this site. I am 68 and am scheduled to have a
double mastectomy with reconstruction done at the same time.
I had never heard of this type of cancer and am grateful for these posts.

Thanks for the info. I can get it locally.

A PET scan is a pretty definitive scan for cancer, in recent years they have started tweaking the tracers to look for specific types of lesions.
You will typically get an IV with a tiny amount of radioactive tracer. Then you will have a rest period before the scan, then you will have the scan.
The specific tracer in a cerianna PET is designed to search for estrogen related lesions. This will give them a better picture of your cancer.
I have had quite a few PET scans and this is a painless scan that provides a giant benefit in cancer.
Can you get this scan locally where you are being treated or will you need to travel?

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.