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

Posted by francinemoran @francinemoran, Jan 4, 2023

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

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Just diagnosed today. How’s your journey going?

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@beachlover71

I am recently diagnosed with invasive ductal carcinoma. Found on annual mammogram. Had biopsies. Found surgeon, had lumpectomy May of this year.,oncotype19 so no chemotherapy. Awaiting appointment with Radiation.Next. Have an oncologist. She wants me to start a hormonal.

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@beachlover71, will you have radiation treatment? How many?

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@reginacrick

Do you have the link? What exactly is the name of the page? Thanks

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That is the exact name for it. Just type it in the FB group search. Sorry you need to join😔

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@gardenfairy

So sorry to hear you are going through this. I am curious how they determined it had not spread to other areas?

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They preliminarily told me that my MRI showed no axillary lymph node involvement. But they will still biopsy my sentinel lymph node during surgery. Technically an ILC means it has spread within the breast tissue. What I was referring to was spread into my lymph nodes. I hope that helps clarify.

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@jenmeier

Right there with you. Just found out yesterday. I don’t know much about the histology because the addendum report wasn’t attached to the pathology but the woman over the phone told me it has not spread to other parts of my body. My appointments are lined up for Tuesday. Thinking of you. Let’s stay connected and support each other. Jen

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So sorry to hear you are going through this. I am curious how they determined it had not spread to other areas?

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@cobb

Another really good resource is the lobular breast cancer (ILC) science and support Facebook group. Extremely knowledgeable and totally supportive. Best of luck to you.

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Do you have the link? What exactly is the name of the page? Thanks

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@cobb

Another really good resource is the lobular breast cancer (ILC) science and support Facebook group. Extremely knowledgeable and totally supportive. Best of luck to you.

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I am recently diagnosed with invasive ductal carcinoma. Found on annual mammogram. Had biopsies. Found surgeon, had lumpectomy May of this year.,oncotype19 so no chemotherapy. Awaiting appointment with Radiation.Next. Have an oncologist. She wants me to start a hormonal.

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@husbandsupportingthis

Hi there all

I am new to this group, a husband with my wife (just turned 50) diagnosed with ILC, and similar to a recent post, we have our first appointment tomorrow to get all the final detailed results after the MRI, Mammograms, and scan. We have been advised its in the lymph nodes as well but of course more details tomorrow.

Again any pointers on what to ask whilst we are there.. also how open and honest are they actually about the diagnosis, the outlook and the reality of it all.. did people find in general they are totally honest and open about it.. ? We have 2 youngish children.. so of course like everyone i guess we need to know all...

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Most doctors will be honest about diagnosis, treatment and prognosis. Insist on it.

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I was there 14 years ago. Stay positive.

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Thank you for the information. I requested to join the group.

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