Just diagnosed with invasive lobular carcinoma (ILC): Any advice?

Well initially I was told this August would be my first follow up and I believe the surgeon mentioned scans. See surgeon, rad onc and med onc in August. That will be toughly 6 months post 1st surgery. I will do labwork in August before I see med oncologist in August. But when I went in 6 weeks ago concerned about a seroma they seemed to indicate possibly no scans for a bit longer. I am going to call and clarify. Given my ILC went from -clean mammo' to 2 cm in 9 months I definatelt am hoping for scans sooner than a year. Dana Farber is supposed to be top notch so interesting to hear your path. That is where that well known lobular focussed doc Otto is correct?

How is Letrozole?

Hi! I am very surprised Dana Farber onco ( I do not see Otto but feel team approach is a plus at Dana) waits a full year and while it will be a diagnostic mammo I feel MRI would be more helpful given my dense breasts. All we have is early detection so I just don't understand but Dana is typically very conservative. They feel the tissue must "calm down" - but I still would feel less anxiety with a 6 month post surgery scan. Keep me posted.
I've been on Letrozole for 4.5 months and fatigue is my biggest complaint - the joint stiffness usually improves once get moving. So far - very tolerable! xox

My surgeon wanted an MRI 6mo. After surgery, but since I just finished radiation May 8, the radiologist says no mammo or MRI would be useful unto 6mo. After radiation effects on the breast clear up, so Nov. Will be my next MRI. I have been on Anastrozole a month this coming weekend. With lots of exercise, one nap seems to refresh me.

Thanks for weighing in @dyevooshka -- both my surgeon and onco want to wait a year 🙁
Has anyone on your team recommended any blood work? xo

I had blood work just before starting Anastrozole (May 17). Since my cholesterol looked good and is controlled by Simvastatin and my calcium looked good on Alendronate sodium weekly plus calcium/D3 daily and have an improved (although still osteopenic in one area) Dexa bone density(done May 10) my doctor felt I'd be OK without any new bloodwork until fall. I am happy to have this as a baseline just to see how Anastrozole (Estrogen blocker) is effecting me. I'll probably just do everything in November...blood and MRI. Feeling confident.

Love the pic!!! Thanks so much for sharing - I have osteopenia and I know Letrozole may soon put in me in category for Alendronate. Again my onco didn't do any blood work so I will ask my primary care as would like lipid panel baseline as I did read Letrozole may impact. Thanks again!! xo Stay in touch -

Hello, I was diagnosed with Invasive Lobular Carcinoma 2 days ago and I am petrified. My anxiety level is through the roof! I'm trying to keep busy but the nausea feeling and pounding heart is over whelming.

Aw, I remember those feelings. They will subside once your treatment plan is underway -- I can assure you of this. You know how they say "knowledge is power?" it is really true. Just be sure to write down all your questions, and seek care in a medical environment where they specialize in these sorts of things. One thing I did right away was drink a lot of water and go organic with food. Think of it as getting your physical body ready for the fight. I also took a lot of walks. Coming onto this platform is a great start. There are many suppportive and informed people on this forum.

So very sorry!! I was diagnosed with the same in Feb and know exactly how you are feeling!! Feel free to message me if you want to chat.

I remember where you are so well as I was diagnosed in oct 2022 but like others have said once your treatment plan is solid you will feel much more in control. May we ask how yours was diagnosed as lobular sometimes tricky to pick up especially in dense breasts and an MRI before surgery helped with my plan! Keep us all posted! I’m 57 yrs and it was 1.8cm ER, pR positive, Hers negative. I had a lumpectomy and 19 radiation treatments at Dana Farber in Boston. I have my first mammo scan in 2 weeks for surveillance. Co