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

I'm grateful for the discussions about ILC. It is helpful to know more about the experiences of others with this diagnosis. I had a lumpectomy and radiation for ILC (Stage 1) in the spring of 2022. On Tamoxifen for a little over a year with no problems, but was just switched to Anastrozole in July. (Onco said "better effectiveness" with hormone+ ILC). Hoping for minimal side effects but it seems like a season of " wait and see". Trying not to be anxious and be grateful for each good day. It's a journey...

I'm sending big hug as I recently finished radiation for a 2cm ILC (lumpectomy, 58yrs). I'm glad your mammo found the reoccurance as lobular is tricky to spot. Have you been followed annually with mammos? My onco at Dana Farber doesn't scan for a year after surgery and I am very anxious that even a diagnostic mammo won't pick anything up in October. I am on Letrozole which I'm thinking you also were prescribed. I know it is jarring to consider breast removal but if you faith in your surgeon it might be best option! oxoxo

I think blind trust is key to your statement. Do your research and trust your intuition. Blind trust in someone else may be misplaced.

I would hope any good oncologist would be continuing his or her research and study as new information is revealed. I know mine does. But yes, there is a lot to keep up with and our cancer is different. Praying that you find one whom you trust!

There is just so much new information and research coming out on lobular. I just don’t know if every medical oncologist can keep up with it. Blind trust has not thus far, served me well on my cancer journey.

I have great confidence in my oncologist although she would not consider herself a specialist in lobular. I imagine that any breast oncologist at a respected medical center would be as thoroughly educated in lobular as in ductal and inflammatory. Maybe I'm overly optimistic, but my care has been outstanding. Check out their education and training. Ask questions. Then trust! Every case is different. It will be about the attention and time they give you!

Why can’t I find a medical oncologist who is knowledgeable and focusing on lobular breast cancer. I’m just getting very tired of hunting.

Thank you
I was hoping to find a lobular specialist a bit closer to me. Mayo, Milwaukee, or Chicago. I will keep searching.

I'll be seeing Dr Kruse at Cleveland Clinic in a couple weeks. She's a lobular specialist and I hear she is good.

It's so difficult with lobular. I have no symptoms. Bone only de novo mets. My FES & FDG PET were both negative. Bone scan negative. Sclertic bone lesions are seen on CT but don't light up. I have another PET upcoming and if there is no progression I can have double mastectomy. With lobular, if you can't see it does it mean it's not there? My breast doesn't even light up on PET. Mastectomy? If it will help. I don't know.