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

Hello,

My Invasive Lobular Carcinoma Stage 3c was found last October. Many tests and a mastectomy,
later - 3 different chemo treatments and 33 rounds of radiation - ended at the end of August.
My burns were finally healed just last weekend. I'm now taking drugs to help stop my cells
from turning into cancer cells and hoping for more than the 2 years my oncologist gave me.
It figures I would get something that hasn't been around very long.

I hope you ladies are doing well

Since I am new to this group, I’m never sure if I’m responding to someone or posting a new comment. This is new. This morning I met with my radiation oncologist (cancer patients have a lot of appointments!) Although at first he suggested one week of radiation, after reading the post-surgery pathology notes, he feels 3 weeks would be better. My core biopsy noted tubulo-lobular cells. But the path report on the excised malignancy was lobular and ductal. Because of the lobular spread (or some such thing) he wants to make sure he gets it all. I’m with him on that. But I was disappointed that lobular had reared its ugly head again. I think there’s more to learn about it.

There is a wonderful FB group: Invasive Lobular Cancer Science and Support, just use the search button. Be aware that there are a bunch of pseudo groups selling all kinds of stuff to cancer patients! Also, please join the FB group for Mepitel Film. It is a non adhesive film to use throughout your radiation to reduce the risk of burned skin. It is in clinical trials and not yet FDA approved but can be purchased from Mayo or medical supply houses in Canada. It saved my skin😊

That’s great to hear. I hope your recovery continues to go well and you can move on to the next phase.

Recovery going well. I think because my lymph nodes were not involved, my arm feels pretty good. I've made an effort to get out and walk. 👍

Good for you! It can be easy to lose yourself in this. My motto was keep moving forward! As for my symptoms, I had none. It was found during a routine mammogram, and I was told they were surprised it was even picked up. Stage 1A.

So glad to hear your oncologist is so knowledgable and reassuring. How is your surgery recovery going?

Thank you so much! Sometimes my brain gets overloaded with all the new info but I still need to function in my daily life.
I am curious to hear if others with this BC subtype had any signs or symptoms before diagnosis.
New waters for sure. Appreciate your encouragement.

Yesterday I saw my medical oncologist and she was very reassuring. I needed that since my general practitioner had been kind of discouraging about the lobular part. The medical oncologist has been practicing for about 12 years and most of her practice is ductal or lobular cancer. When I asked her about reoccurrences With lobular, she said that no she doesn’t see that. I’ll start on one of the medication‘s after my radiation but I need to get a little further out from my surgery.

Sorry to hear you’ve joined our club! Those early days are nerve wracking and I feel for you. Hang in there and just take it a day at a time. Wishing you the best as you navigate these new waters!