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invasive lobular carcinoma and invasive lobular in situ

Posted by gailmarienewton @gailmarienewton, Jan 17 7:33am

I have recently been diagnosed with invasive lobular carcinoma. I am overwhelmed with info on web. I am interested in treatments. What treatments have you had? How did it affect you? (I also have leukemia....so I am really concerned.)

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gailmarienewton | @gailmarienewton | Mar 30 4:07pm
In reply to @llthomson "@brightlight66 I had understood that ILC does not respond to chemo. I am surprised that it..." + (show)
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@brightlight66 I had understood that ILC does not respond to chemo. I am surprised that it was recommended for you. Did you have radiation also? Was it a single mastectomy or double? What medication are you currently on? Thank you for sharing.

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@llthomson I have chemo for leukemia....not the breast. That will be radiation and hormone therapy.

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Colleen Young, Connect Director | @colleenyoung | Apr 8 7:21pm
In reply to @tracey72 "I’m just a little further down the track than yourself, my diagnosis was mid February and..." + (show)
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I’m just a little further down the track than yourself, my diagnosis was mid February and it was the scariest time of my life. I knew nothing about different types of BC and dived head first into learning what I could about what was happening to me.
The beginning is rough. I had anxiety about all the scan results and the waiting for results was the worst part.
Each time a result came through, I thought to myself, answers at last! But it doesn’t happen like that.
I’m 5 weeks post diagnosis, I’ve had a mastectomy to my right breast and still healing from that surgery.
My anxiety has lessened now, the shock of the diagnosis has sunk in, and my treatment plan hasn’t been set yet, I’m seeing the oncologist in 3 days.
For me, reading and understanding ILC and how it works, helps you to advocate for yourself. I’ve asked lots of questions and even having an understanding helps when they give their medical advice. Sometimes I have questioned their answers.
I also reached out when first diagnosed, and was told the anxiety does settle and it gets easier. Where my head was at the time, that seemed impossible, but here I am, 5 weeks out feeling encouraged by the support available, and knowing there is medical treatments around to fight this.
You will get through this stage. Deep down, there is a fighter in there just waiting for the moment when you say to yourself, I’ve got this!
Tiny steps forward. 💗

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@tracey72, such a real and helpful post. The impossible becomes possible and information helped give you understanding and possible back some control (?) Has the anxiety settled for you? How are you doing?

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tracey72 | @tracey72 | Apr 8 8:11pm

Hi, Im in Australia, so things are a little different here.
Oncotype testing isn’t standard, nor is FES Pet Scan.
Anxiety is a little less, until I learn new information, for eg, yesterday I learnt that a low Pgr % had “less favourable outcomes” Im at 5%….
What I am doing though, is having an EndoPredict test, which is partly covered by our Medicare.
I am in what’s they’ve told me, “ the Grey zone”.
I’ve had a SMX, pathology tells me I had ITCs in the sentinel node, deep dermal infiltration and suspicious lymphovascular invasion with multi focal 3.5 tumor.
With this info, I’ve been given the option to do Radiation Therapy, and we are looking at Chemo, pending the EndoPrdict result.
I’m 7 weeks post diagnosis, the fear is still with me, but I’m taking on board all the medical advice, and definitely advocating for myself to get the best possible outcome for me.
I think I’ll be anxious for the rest of my life, but I am an over thinker

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gailmarienewton | @gailmarienewton | Apr 9 5:40am
In reply to @colleenyoung "@tracey72, such a real and helpful post. The impossible becomes possible and information helped give you..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@tracey72, such a real and helpful post. The impossible becomes possible and information helped give you understanding and possible back some control (?) Has the anxiety settled for you? How are you doing?

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@colleenyoung
Yesterday got tattooed. I had to cancel trip with grandchildren. Today… 2 MD appointments… I think I need a happy day… maybe tomorrow!!! Always smiling….

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gailmarienewton | @gailmarienewton | Apr 9 5:43am

I am an overthinker, too, and this whole process is scary to me…

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