Pleomorphic LCIS and Research

Options
124»

Comments

  • cornellalum
    cornellalum Member Posts: 191
    edited May 2010

    I got my letter earlier this week. 

    · Share on FacebookShare on Twitter
  • Minnesota
    Minnesota Member Posts: 923
    edited May 2010

    I wonder if Dr. King will be looking at the bilaterality of this. I'm not sure where the slides are from my surgery in New Orleans, but I'm sure I could track them down - it would be extremely interesting to find out, since we are put in the position of trying to decide what to do about the other breast... I finally looked at the pathology report from the other breast. All was not wonderful in that girl, either, tho no PLCIS. They did find "stromal sclerosis" and "sclerosing adenosis", as well as cystically dilated ducts. In researching what this means, I found out that usually a biopsy is required to confirm this diagnosis, as the condition is difficult to distinguish from inflitrating breast cancer on mammograms - where it is usually first seen. The risk of breast cancer with this condition ranges from 1.7 to 3.7 fold. Apparently the lobular architecture becomes exaggerated and distorted. It can also coexist with both invasive and in situ cancers. So, I'm glad it's out of there! That increased risk, combined with the PLCIS increased risk was not a good thing!

    · Share on FacebookShare on Twitter
  • cornellalum
    cornellalum Member Posts: 191
    edited May 2010

    I also would like to know exactly what the study is going to look at.  I think I just got so excited that someone was going to look at PLCIS at all, that I neglected to get the details.  I would assume that we can contact the doctor and find out?

    Minnesota - sounds like you absolutely did the right thing.  I had ALH in the other breast, so that's two of us that had "stuff" going on that was undetected.  Hope you are doing well!

    · Share on FacebookShare on Twitter
  • KellyMaryland
    KellyMaryland Member Posts: 350
    edited May 2010

    May I jump on this thread? I was diagnosed with PLCIS just last week. Omahagirl- is it too late to join the study? I so appreciate the support and advice I've gotten so far- thank you and all the best to you all.

    Kelly

    · Share on FacebookShare on Twitter
  • OG56
    OG56 Member Posts: 897
    edited May 2010
    Kelly if you PM me I will give you the contact information at Sloan. I don't know what they are looking at exactly either but hopefully they are looking at the cellular structure and seeing if it morphs into anything dangerous.
    · Share on FacebookShare on Twitter
  • OG56
    OG56 Member Posts: 897
    edited August 2010

    sonib@mskcc.org is the contact person at Sloan. Tell them you are interested in Dr. King's PLCIS study and give them your contact information, ie name, address and phone.

    · Share on FacebookShare on Twitter
  • grandmaof4
    grandmaof4 Member Posts: 10
    edited March 2011

    I've been rereading all the threads to keep up on what's been happening.  I think you sent me contact info on the PLCIS study some time ago but I had a computer crash and lost a lot of my info.  My PLCIS diagnosis came Jan. 2110.  My lumpectomy didn't get clean margins but the team didn't feel that was necessary with the diagnosis.  No radiation or chemo recommended.  Taking Evista (due to stroke/TIA not able to take tamox).  Neither surgeon nor oncologist seem to do any continued research on my behalf (although I can't be sure of that) and it feels like they're treating like LCIS.  Having mammograms @ 6 mo and MRIs every 12.  Had MRI guided biopsy a few months ago but nothing new was found.  Surgeon brought up the bilateral mastectomy again.  Thinks I'll get tired of all the biopsies and want to move on from it.  Just don't know.  Have already had 4 surgeries (3 benign) and several biopsies over the past 20 years.  Anyway, most interested to see if there's anything happening on this front.  Thanks so much for all your contributions, everyone!  PS  I'm in IL

    · Share on FacebookShare on Twitter
  • KellyMaryland
    KellyMaryland Member Posts: 350
    edited March 2011

    Hi Grandmaof4. I don't have the exact details of the PLCIS study but do know that it was being conducted at Sloan Kettering in NYC. I did contact them a year ago and was told that I couldn't be seen there until I'd made a definite decision not to go with the PBM. Found that not helpful at all. But maybe someone who's had some good experiences there will chime in.

     I did opt to get the PBM not long ago but before that my imaging schedule was every three months, alternating MRI with Mammo or BSGI (a type of mammo that uses contrast dye like the MRI)- so that was two MRIs and two Mammos a year....plus whatever they would decide to biopsy.  For me, with four young kids, it was an emotional and logistical nightmare.  But, the PBM is not an easy road either, definitely a weighing of the lesser of two evils.

    Happy to talk with you about my experiences or hear you out on yours.

    Kelly

    · Share on FacebookShare on Twitter

Categories