LCIS

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  • LCISgirl
    LCISgirl Member Posts: 85
    edited May 2008

    Hi ladies,

    Sorry for any confusion.  I was dx with LCIS with all of the biopsies. After the bilateral mastectomy, the pathologoy showed there was an invasive portion ILC.  I saw 4 surgeons before making the decision for mastectomy and yes, they all had a different take on things!!  For me, I just wanted to avoid the monitoring, biopsies and to remove the threat.  I wanted to avoid any possibility of radiation or chemo and wanted to be aggressive from the get-go.  I know it's a personal decision and everyone is very different in how they handle receiving a dx of LCIS or high risk (even if not considered cancer).  The oncologist is following up with me every 4 months and so far doesn't think there is a need for Tamoxifen.  I'm happy with that.

    tt~let us know how you are doing.  Best wishes to all!!

  • othershoe
    othershoe Member Posts: 8
    edited June 2008

    BSGI Update:  I just wanted to let those of you who may be following this Breast-Specific Gamma Imaging know how that played out.  In short - the BSGI did find something that my mammograms did not - an "area of concern" that ended up being diagnosed, after a core biopsy, as "fibrocystic change" (formerly called fibrocystic disease).  

    This new information from my left breast will be combined with the information from the right (LCIS & ADH).  Not sure what the next step is yet - meeting with the surgeon, then going to a "high risk clinic" -- but the point is.... the BSGI turned out to be very useful in my case, as it found something other things couldn't see.  I do have very dense breasts, and the BSGI located this small cyst or tumor - 1 inch across, half an inch wide.  It was very near my chest wall; that may be why it was hard to see in a mammogram.

    Write me if you have more questions. Will keep you posted.

    Shoe

  • Curlytop71
    Curlytop71 Member Posts: 5
    edited September 2008

    Shoe,

    I live in Texas and as far as I know, only one clinic in Houston has the equipment to perform the BSGI... well, after Ike I have no clue when they'll be up and running. Do you know if there is other place in Texas where I can have this test done?

    Thanks!

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited September 2008

    To all - This is an interesting thread that I didn't see until Curlytop responded and brought it to the surface. Since so much time has passed, I expect that some that wrote earlier may have more information now. I too was dx'd w/ LCIS after years of bad mammos and three bx's. I too am sitting tight for now, but certainly keeping my BPM option open. My husband describes it as my emotions needed to catch up w/ my brain. At my age (54) my life is more important to me than my breasts. So far my surgeon has reassured me that we have time to monintor things closely before we go the BPM route. Thanks for writing and let me know what you all learn as time progresses.

  • mtbmom
    mtbmom Member Posts: 135
    edited September 2008

    LCISgirl- thanks for your post! To me, that's what makes LCIS unnerving-have they missed something?  I know they did with my mom.  I can't help but think with my LCIS, with my family history, it's just a matter of time before they find something invasive. I really like my new oncologist though- he is very thorough and I know between him and my- Breast diagnostic center Dr. if there is something there, they will catch it (my tumor markers have been elevated each blood test, so I don't think I'm just fretting-I had pretty much settled in to just living with LCIS). My onc also changed me to fareston-, because I couldn't handle the tamox.  Best of luck to you-hugs-Denise

  • LCISgirl
    LCISgirl Member Posts: 85
    edited October 2008

    Hello everyone~I have not been on the board for quite a while since I was trying to "move on" I guess I felt time away from all the discussion might help.  Of course, in between I've heard so many stories just through friends, work etc. of other ladies struggling with this beast! 

    An update ~ I've got nipple reconstruction scheduled the first week of Nov.  I'm so excited about that.  The mastectomy was Dec 07, so it's been almost a year for this whole process.  I ended up having TAH w/removal of ovaries and tubes 4 wks ago.  There was thickening of endometrium, fibroids and distorted uterus that was the size of 4 mo pregnancy!! (No wonder sit ups weren't working!) I had an endometrial biopsy that was benign prior, but doc said with the bc history(highly estrogen/progesterone positive) and the monthly problems with the excessive bleeding, pain, and the thickening of uterine lining...He felt it was the best way to go.(I wonder how much worse it might have been if I was on Tamox??)  It turns out that there were multiple fibroids (5cm for largest), fluid filled cysts on ovaries, tubes and myometrium. Also, adhesions...(endometriosis).  All of that considered benign, but needed to come out and I'm looking forward to feeling much better going forward.  Also, no signs yet of that "instant surgical menopause" and doc says by now after 4 wks. it's possible that I won't have increasing symptoms....things usually start right away.  Anyway....sorry for such a long post, but wanted to let you know that all this started with LCIS and I'm one of those aggresive people who chose to do the PBM's and eventually the hysterectomy.  I haven't needed any rads, chemo or tamoxifen and that was my goal!!  I did have my most recent follow up with the oncologist yesterday, who wants an ultrasound of thyroid, since he felt something there.  I'm hoping it's just a bit of swelling or irritation because of recent surgery??  Then after that, the next follow up in February with a PET scan just to check whole body.  I know it seems like so much....but I think finding things early and attacking quickly makes me feel better. (Maybe I'm just a control freak??) Ha...I know everyone is different in their comfort level and I just want to send my best wishes to all who are making decisions and struggling with all the questions.  tt214 did you have the PBMs??  I'm curious to hear how you are doing??  I hope all is well!!

    LCIS girl

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited October 2008

    Hi there - I have an update as well. I saw my oncologist in late September and he strongly suggested a PBM for me as well. As he said, I am a hard read - the chances of missing a cancer are very high. And most likely I will end up w/ a mastectomy by the time I reach 60 anyhow. By doing the surgery now I can choose the time and place and have reconstruction and move on. I am pretty certain I am going to follow his suggestion. I have chosen my surgeon and my PS and my method of reconstruction. My husband and family are supportive. I will let you know how it turns out. Good luck to every other woman out there dealing w/ these choices! - Jean

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