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

Has anyone beed faced with a recurrence, after diagnosis and treatment for early stage ILC? Having recently heard that invasive lobular cancer can "be sneaky" and hard to detect, I admit to having some potential concerns about what to expect. I had no symptoms with original diagnosis. (Just found on a yearly mammogram). Thanks for sharing any insight/experience.

Agree.

Hello @erthling ,
What a horrible setback after all you went through. I am so sorry.
2017, for me, was also the year they saw "something" on my mammo in the exact spot they saw "something" in 2012 but dismissed. ILC does not have the benefit of being easily spotted like IDC and that scared the heck out of me. I scheduled a double mastectomy ASAP. I did this after learning how it spreads undetected, like mine did for years and reading stories like yours. Two Dr's wanted to do a lumpectomy. NO WAY! Post-mastectomy pathology revealed a 2nd area of Lobular never seen. I was so happy I made that decision.
I understand the idea of losing your breasts is unimaginable. I found myself thankful that this cancer landed on a body part I don't need to survive. Wasn't pancreas or liver. Our family and friends love us for US, not the shape of our upper bodies. It's about surviving.
My husband sees my 2 big scars and he says it reminds him how lucky he is I'm still here.
Best to you in making this decision. We have nothing without our health.

Hi! I'm so with ya as I have my first scan this October after November 2022 surgery for ILC that was found on mammo ( barely as it was "questionable and ultrasound showed nothing but MRI picked up 1.8cm). I hope I don't have to beg for MRI or least alternating mammo and then 6 month later MRI!! I will update and good luck!

I had no symptoms either. It showed as a distortion on the mammogram. Had a biopsy and it is conclusive for invasive lubular carcinoma. They also found a second area of distortion in which their biopsy today.

Thank you.

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.

I was diagnosed at stage 4 (bones) with no symptoms. Lobular is pretty sneaky. No lump. Nothing measurable but it's there. I'm on meds and feel fine.

Spoke to surgeon today. Since mass sort of goes half way around and biopsy showed cancer at both ends of it she said mastectomy probably be better than lumpectomy. I'm ok with that. Who needs 2 boobs anyway at my age. All I'm wondering will I require chemo too. NOT !ooking forward to that at all! Been reading and they say they've been overly aggressive using chemo over the years and now they've decided it's not always neccessary. Got my fingers crossed😶.

I had ILC and had a bilateral mastectomy. I had no radiation or chemo. This was 3 months ago and I go for reconstruction later this month. 🙏🙏🙏 for you.