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

Posted by francinemoran @francinemoran, Jan 4 1:10pm

I’ve just found out i have invasive lobular carcinoma. Stage 2. I have an appointment with a surgeon today and an oncologist next week. Not sure how all this works makes me nervous. Any help would be appreciated

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Hello everybody, I am 64, new to this group. Diagnosed with invasive lobular carcinoma 6mm 3 weeks ago. Next week will be my first appointment with oncologist. Could you, please, advise me what to ask?
How were your appointments, francinemoran?

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I wish I had asked everyone I initially saw in those early days to tell me what makes ILC different from the ductal type of breast cancer. I may have understood why a moderate sized tumor emerged from pathology almost tripled in size. I’m sure I would’ve had a greater appreciation for the additional tests and scans if I had had more data. Knowledge is your power but keep a very open mind throughout the process. I was positive that, due to a lung condition, I would not have radiation therapy. Well, I had 33 sessions but when your margins still have cancer cells and the radiation oncologist gives you great information it’s actually a no brainer.
I tried to step away from myself and consider the whole process as happening to someone else. You tend to get a totally different perspective. Hugs as you begin your journey. You have lots of caring companions.


Stage 2 is considered an early stage. They will advise you on whether you need chemo, radiation and what kind of surgery depending on how big your tumour is and what kind it is. They will run alot of tests at first and then talk to you about what would be best to do.
It is alot to process at first and scary but you will get through it. Ask questions if you arent sure of anything they are great at helping I had stage 2 as well. Try and keep a positive attitude because that really does help. Thinking of you

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