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

How is the first mamo after lumpectomy??? Painful?

I love that I found this message board to help all of us discuss & manage our journeys. I am 70 years old and was on HRT for 20 years & was diagnosed in March with Invasive Ductal Carcinoma Grade 1, HER/PR +, HER2 neg, tubular. It was found at a reg yearly mamo & had a biopsy & then lumpectomy with clear margins followed by 5 radiation treatments. My oncologist wants me on tamoxifen but I so far declined due to the side effects I have watched my friends endure & I was told mine is slow growing. I have my first mammogram this Wed. & my breast is still sore with a knotty feel above the nipple. Is this going to be painful?
Thx a million in advance for any words of wisdom.

Gather tips from others and keep reading and looking up the vocabulary so you understand everything. I took my daughter and husband with me to my first post-diagnosis appointment and my daughter wrote down notes along with me. She caught things I had missed! We went home and combined and rewrote our notes. Next time I took a small recorder and asked whether I could tape record our consult. It really helped to gather all the facts presented. When the shock wears off I hope you'll feel empowered as I did by learning as much as you can on your own. This is new for us, even though our doctors rattle off facts, numbers, procedures with swift ease. I felt very confident because I tried to gather information from reputable medical sources like Mayo Clinic. You came to the right place! Hugs for strength!

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

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.

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.

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.

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 -

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.

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

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.