ILC followed by LCIS

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georgie1112
georgie1112 Member Posts: 282
edited June 2014 in LCIS (Lobular Carcinoma In Situ)
ILC followed by LCIS
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  • georgie1112
    georgie1112 Member Posts: 282
    edited May 2013

    I had ILC seven years ago. Long story stort, the breast where I had my lumpectomy has been changing the last 2 years, though imaging did not show anything on MRI, ultasound, mammogram. But there are red dots, capillaries, wrinkling that are new. A mammogram found calcifications and after stereotactic and excisional biopsies. My oncologist tells me there is an 80% risk of IBC or 40% with Tamoxifen which I started taking a few years ago.The excisional biopsy found more LIN. I haven't gotten a copy of my pathology report because I was on information overload trying to read studies.

    My oncologist is suggesting mastectomy and this makes sense. Haven't spoken to my surgeon yet.  I still have dense breasts after menopause and there isn't good screening. I know with lobular there can be false negatives in any of the tests.

    Wanted to connect with others who've been through this. I am tired after two surgeons were dismissive about my concerns about my breast changing. Makes no sense there are suddenly changes 5 years after surgery. Also terrified to be back dealing with this again.

    Georgie

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  • altered_reality
    altered_reality Member Posts: 17
    edited May 2013

    We are here for you.......  Getting a copy of your pathology report will be helpful when it comes to making any decision concerning the possibility of having a mastectomy. Dismissive surgeons are extremely annoying, to say the least.  Don't give up..... I know that you are tired and terrified to be dealing with all of this again, but you are your own best advocate.  Keep pleading your case!  As I said before, we are here for you..... please keep us informed about your progrees..... we really do care!

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  • georgie1112
    georgie1112 Member Posts: 282
    edited May 2013

    Thank you!!! I've been in avoidance mode:( because my appointment with the new surgeon is so far away and it is my strategy for "avoiding stress"! So I haven't checked the board. The stress is all there, in the back of my mind though. I got the path report and it mentions scattered intraepithelial lobular neoplasia, atypical lobublar hyperplasia and more calcifications. Interesting, because no calcifications showed after the stereotactic and the radiologist said they had removed them all. So more calcifications that didn't show up on the mammogram.  I really want the mastectomy. Scared of course. Mostly for the use of my arm and possible nerve damage or more lympedema. But hopefully no more lymphedema if they aren't taking any lymph nodes? Guess I need to post under another topic to ask about mastectomy questions... One step at a time. Thanks for the support. It means so much,georgie

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  • leaf
    leaf Member Posts: 8,188
    edited May 2013

    Let us know how it goes, OK?  I would probably have gone with BMs if I had a breast surgeon who would do them.  I was told I wasn't going to get a new breast surgeon.  I'm hoping I won't get any more breast issues before she retires so I won't have to deal with her.  (I didn't get along with her for many reasons: she was an excellent surgeon, but doesn't listen well.  I bet that is par for surgery in general.  There is probably a good reason why  many surgeons like to deal with patients that are under anesthesia!)

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  • georgie1112
    georgie1112 Member Posts: 282
    edited May 2013

    hmmm....seems to be just like my surgeon. Does not listen! My former surgeon is plaquating and well just rude. And worse than that she gives incorrect information which puts my life at risk.

    Too bad you are stuck with your surgeon. Luckily I can switch. There ARE surgeons who listen. I've had several though one retired and the others are in different specialities.

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  • leaf
    leaf Member Posts: 8,188
    edited May 2013

    Awful, awful, awful!  I'm so glad you can switch.

    I had one really great surgeon for an unrelated condition.  When I was getting discharged from the hospital after an overnight stay, there was a lot of paperwork he had to sign.  Since I work in a hospital, I knew there was a lot of paperwork, and I asked him, "Don't you hate all this paperwork?"  He replied, "If it makes my patient safer, I'm all for it."

    I hope your new surgeon is something like that.

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  • georgie1112
    georgie1112 Member Posts: 282
    edited May 2013

    Thank you!!! Hugs...

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  • cleomoon
    cleomoon Member Posts: 443
    edited June 2013

    Shit! Is swearing allowed on this forum? So sorry u are faced with this again. I can only give u my thoughts on this and my feelings and experience. I am not a medical expert. I opted for a BMX after finding LCIS in my right breast. So so hoping my opinion will not be taken the wrong way :( After invasive lobular in the breast and then more crappy stuff...I would definitely choose a mastectomy. Lobular is so hard to detect unfortunately. Hoping ur initial ILC had no lymphnode involvement. Sending u my best positive thoughts.

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