1. < Breast Cancer

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

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ppat4pr | @ppat4pr | May 26 3:30pm
In reply to @kerynbookeraustralianoosaooooooo "hi if you do need to have a masectomy , the thought of it is a..." + (show)
@kerynbookeraustralianoosaooooooo

hi if you do need to have a masectomy , the thought of it is a lot worse than having it . i had one went very well . stage two , can be controlled . you will be good . dont worry about what you cant control or the what ifs . most of it never happens anyway . everyone is there to help you .

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Excellent advice. I, too, had ILC in my left breast over 20 years ago. Two years ago at age 82, I had a left breast mastectomy; was on Letrozole for 5 years. Have been off it only a few months but am doing fine. I enjoy life and will not think about what will be. As my grandfather, and you, Kern Booker, state 90+ percent of the time, nothing happens. The other 10 percent will occur whether or not we think about it; so worrying serves no healthy purpose. I hope everyone heeds your advice. Best wishes for an stress-free life, Francine Moran, and every single one of us.

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jenmeier | @jenmeier | Jun 1 4:24pm

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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Laurie, Volunteer Mentor | @roch | Jun 2 3:37am
In reply to @jenmeier "Right there with you. Just found out yesterday. I don’t know much about the histology because..." + (show)
@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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@jenmeier

Welcome Mayo Connect. You will find many women who are in various stages of treatment for breast cancer. It is great support system for both emotion and practical advice Someone in this group has probably asked the same question you are wondering about.

Patience is key at this time, there is lot of information that will come your way.

Take a note book with you to appointments. Also, if your clinic has online portal, read the provider 's notes after appointment to verify what you heard.

Will someone be going with you to your appointment?

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jenmeier | @jenmeier | Jun 3 12:32pm

Hello and thank you. Yes, I have someone going with me. I plan on being involved here with the group for information and support so I am grateful in advance to everyone here 🙂

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1 reply
cobb | @cobb | Jun 3 4:56pm
In reply to @jenmeier "Hello and thank you. Yes, I have someone going with me. I plan on being involved..." + (show)
@jenmeier

Hello and thank you. Yes, I have someone going with me. I plan on being involved here with the group for information and support so I am grateful in advance to everyone here 🙂

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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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jenmeier | @jenmeier | Jun 3 5:21pm

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

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lepa13 | @lepa13 | Jun 8 3:25pm

I was there 14 years ago. Stay positive.

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lepa13 | @lepa13 | Jun 8 3:28pm
In reply to @husbandsupportingthis "Hi there all I am new to this group, a husband with my wife (just turned..." + (show)
@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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beachlover71 | @beachlover71 | Jun 8 8:43pm
In reply to @cobb "Another really good resource is the lobular breast cancer (ILC) science and support Facebook group. Extremely..." + (show)
@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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