Pleomorphic LCIS

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  • cornellalum
    cornellalum Member Posts: 191
    edited January 2010

    Omaha Girl - OMG.  I am so sorry to hear about the latest. Does your doctor really think that this is how you should be spending your life? Five biopsies since June - does she really think that is acceptable? What is she saying about the future?  BTW - I grew up on Long Island - in Farmingdale.  I am told that even though I have been gone for over 25 years, I still have my Lawn Guyland accent. Where do you live?

    Minnesota - Holy crap. I almost fell out of my chair laughing at the alien comment.  My husband wanted to know what the heck I was reading. Too funny.

    Thank god I have you guys.  Not sure how I'd be doing without you!

  • OG56
    OG56 Member Posts: 897
    edited January 2010

    Hi Cornellalum, no she doesn't and she said after this one we have to come up with a plan for future monitoring etc. She is not a fan of the MRI and had she been my first NY BS I would have never had one, another BS opened Pandoras box for me. I am living in Levittown not to far from Farmingdale. I am sure you still have your accent(:

     In 2002 I had abdominal surgery and when I was waking up in recovery someone kept saying Lind er, I said without opening my eyes "are you from Long Island?" LOL

    Keep Laughing!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2010

    That's exactly what my oncologist said ----"opening Pandora's box"--when I first asked about having MRIs for LCIS. It took me nearly 3 years (I kept bringing up the subject every 6 month visit) as he felt they led to unecessary biopsies and the anxiety that goes along with it. But I told him I would rather take that risk than have an invasive bc go undetected. I've been having them yearly for about 3.5 years now and they've been clear for the most part--no futher biopsies have been needed--my next one in coming up in March. But if I have any future issues that necessitate another biopsy/lumpectomy, I would seriously reconsider BPMs.

    Anne

  • leaf
    leaf Member Posts: 8,188
    edited January 2010

    I can't imagine going through 5 biopsies since June.   I sure like to respond to stressful situations with laughing rather than anxiety.  You didn't ask to be in this situation.  My best wishes to you all.  Please keep us informed how all these biopsies (breast, uterine) go.

  • Minnesota
    Minnesota Member Posts: 923
    edited January 2010

    Uterine biopsy - NORMAL!!!!!!! I don't want to go thru another biopsy ever, ever again!

  • macksix6
    macksix6 Member Posts: 201
    edited January 2010

    Eve that's great news.

    Cathy I am thinking of you and sending you healing prayers.

  • leaf
    leaf Member Posts: 8,188
    edited January 2010

    I hear you, Minnesota!  Congrats on the pathology!  I hope you NEVER need another biopsy.

  • cornellalum
    cornellalum Member Posts: 191
    edited January 2010

    Minnesota - Hooray!!  I'm with you on the nixing of future biopsies.

    Cathy - Been thinking of you, and hoping everything went well.  I know we'll be hearing from you when you can get to a computer.

    BTW everyone - I told them to schedule a bilateral mastectomy for me.  I don't have a date yet, but my decision is made.  I'm going to join Macksix6 in moving on with my life.

  • OG56
    OG56 Member Posts: 897
    edited January 2010

    Eve, thank goodness for B9 results and I say this is the end of all poking and prodding!

    Cathy, keeping you in my thoughts and hoping you are recovering quickly.

    Cornellalum, good for you and I wish you peace in your decision...

  • Minnesota
    Minnesota Member Posts: 923
    edited January 2010

    Cornellalum,

    I think I will be right behind you...

  • cornellalum
    cornellalum Member Posts: 191
    edited January 2010

    OK - I got the last opinion, from Sloan Kettering.  First, my diagnosis of classic and pleomorphic LCIS was confirmed. And the doctor said classic LCIS carries a risk of 17% - 25% of developing invasive cancer. PLCIS adds an unknown amount to that risk.  There are three options: monitoring, monitoring and tamoxifen, and mastectomy.  No recommendation given.  However, if mastectomy is chosen, it should be bilateral, and should include sentinel node biopsies.

    So....no new information.  Pretty much a waste of time, actually.  I'm moving ahead with the bilateral mastectomy with sentinel node biopsies.

    Minnesota - I sent you a PM.

  • balsie
    balsie Member Posts: 391
    edited January 2010

    cornellalum~ They just don't give recommendations ..it seems like they put out options and let us pick our poision and then support whatever we want to do.  I do think your choice is a good one. I did the same thing.  I just had my exchange from TE to silicone and I love the outcome.  I am also taking zometa and arimidex.  Are you going to do reconstruction?

    Warmly,

    Balsie~

  • Minnesota
    Minnesota Member Posts: 923
    edited January 2010

    Hi Balsie!

    So you had ILC in one breast and then PLCIS in the other? Did you do recon?

    (Isn't this heat wave nice?!)

    Eve

  • Minnesota
    Minnesota Member Posts: 923
    edited January 2010

    Cornellalum,

    Their recommendation re: both sides rather than one is very helpful. Tho I knew this, hearing that Sloan said it is reassuring. The fact that I consider this is reassuring is telling, isn't it?

    Thanks.

  • balsie
    balsie Member Posts: 391
    edited January 2010

    Minnesota~

    Yes I had ILC & PLCIS in the other and I did do reconstruction.  I did TE and on Tuesday had them removed and silicone put in.  Today I am going to have the bandages taken off. I am excited to see the outcome.  I still have the drainage tubes in and probably will for the weekend and into next week sometime.  I really think it will be a good outcome.  I'll post tonight when I get home from the PS office. 

    I love the warm up~Smile

    Balsie~

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2010

    Hi All

    Thanks for your well wishes.  I am just back yesterday from my 1000 mile trek.

    I just wanted to let everyone here know that I am recovering well and it really is so good to be on this side of things.  The anxiety of making the decision as to whether or not to have bilateral was very, very difficult, as you are all fully aware of.  But it is done now, and there is a certain sense of relief that comes with it.  The surgery went well, and I was soooooooooo happy when the doctor came to see me afterwards to tell me the preliminary test done on the 4 nodes taken is good news.  Now I just wait until Feb 1 for the final pathology.  I am actually quite suprised at how well I am able to get around and do things.  Certainly not worse than a C-section and I had 3 of those.

    OmahaGirl I am so sorry you have to go through this again. My heart goes out to you to have to do this again so soon after having it done. I will be thinking of you.

    Minnesota that is great news.  Hopefully you will not need anymore biopsies for a very long time or better yet not at all.  Praying the aliens stay "out there" somewhere else.

    Cathy

  • macksix6
    macksix6 Member Posts: 201
    edited January 2010

    Cathy welcome to the other side. I was praying for you to have clear nodes. Hopefully the pathology will come back with just the small area of invasive cancer and I hope you will not have to have any further treatment. You sound really good. Take care of yourself and get lots of rest.

  • cornellalum
    cornellalum Member Posts: 191
    edited January 2010

    Cathy - I'm so glad to hear that your surgery went well, and that the preliminary results from the nodes was negative.  I also had 3 c-sections, so hearing you say that this wasn't worse than that is very reassuring. Please keep us posted on how you're doing!

    Balsie - I'm not having reconstruction.  I'm just not really interested at this point - it just sounds like more surgery and potential problems to me. I figure I'll just pop the foobs in if I want to, and go without if I don't feel like messing with them.  Maybe I'll change my mind at some point, but I can't imagine doing so at this point.

    All - my surgery date is February 8 - three weeks from now.  So the countdown begins.  I'm sure I'll be more nervous as it gets closer (but I'm really not nervous at all right now - not sure why - I probably should be, right?)

  • Minnesota
    Minnesota Member Posts: 923
    edited January 2010

    I'm sooo relieved for you, Cathy! We'll all keep our finger crossed on pathology!

  • balsie
    balsie Member Posts: 391
    edited January 2010

    Cathy super happy for you...keeping positive thoughts for a good path result. 

    cornellalum~ I wasn't going to do reconstruction either but my surgeon talked me into it...I listened to her reasoning....actually I am glad I did, but you are right it is more surgeries etc. but I am happy that I did it. It is not for everyone and as long as you are happy is all that matters.  Good luck to you and I hope everything goes well. 

    Everybody have a great Monday

    Balsie~

  • OG56
    OG56 Member Posts: 897
    edited January 2010

    Well no big surprise here, the pathology from the MRI biopsy reads LCIS with Pleomorphic cells! Now I have to have another excisional biopsy...this will be my last.

    If all is B9 I will be going on a little vacation to New Orleans to visit the BS and hospital and then to have some fun too. I feel I just need to conquer the fear and move on.

    Linda

  • Minnesota
    Minnesota Member Posts: 923
    edited January 2010

    Omaha Girl,

    New Orleans is a good place to "vacation." Really! Been there, done that, on one side. Will go there again for the other! Amazing. Magic. I can give you some inside scoop, if you have any questions.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2010

    OmahaGirl I am so sorry that you have to have another excisional.    Does the surgeon say they must get clear margins on it?  I will be hoping and praying for you to get nothing but B9 results.

    Take Care

    Cathy

  • OG56
    OG56 Member Posts: 897
    edited January 2010

    I might have given the impression here that I am going to New Orleans for surgery, my plan is to go for a vacation and while I am there visit with the PS, the BS and see the hospital.

    Cathy, the radiologist called me yesterday to tell me about pathology (my BS had already told me) she said that now they have a great baseline and shouldn't have to do anymore biopsy's (hah! I don't believe it) and that she feels they could stick a needle in anywhere in both of breasts and come out with LCIS...My surgeon only wants clear margins on the PLCIS not LCIS. I am feeling like a Thanksgiving turkey LOL.

  • OG56
    OG56 Member Posts: 897
    edited January 2010

    Well I made it through another excisional biopsy yesterday at Sloan, so let's see that makes well....to many! My surgeon said yesterday she doesn't want to do anymore MRI's because of my extensive LCIS..she is not the one that ordered my first MRI which started this whole ball rolling of 2 MRI's 3 MRI biopsy's and 3 excisional biopsy's since June...

    I don't know even with all this that I want to give them up. Has anyone had a PEM?

    I will have to wait a few days for pathology report, this biopsy is directly in the same place as my original BC but in the contralateral breast, I am praying no mirrored effects going on here, but of course it is what it is(:

    Have a good weekend.

  • cornellalum
    cornellalum Member Posts: 191
    edited January 2010

    OmahaGirl - I am sending good vibes your way for negative results on the biopsy.  You have been through entirely too much in the last 8 months!  One question - since ILC is hard to find on mammograms, if you're not doing MRIs, how will they screen for ILC?  Also, what's a PEM?

    I am in the countdown to my BMX (Feb 8). I will be honest, I am so relieved to have made the decision, and I have not had any second thoughts at all.  It is definitely the right thing for me. There is no doubt in my mind that one or both of those puppies is headed for invasive bc, if it's not already there. So heading it off at the pass is my best plan (before I have to have chemo, or radiation, or tamoxifen).  For me, when I realized that the "best" outcome of watchful waiting would be screening every six months for the rest of my life (and tamoxifen for 5 years), and the inevitable invasive procedures that would come with the false positives, the decision got easy.

    I'll let you know how I feel when I get to the other side.

    Please let us know as soon as you know the results.  I'm thinking of you.

  • Minnesota
    Minnesota Member Posts: 923
    edited February 2010

    Omaha Girl,

    We will all keep our fingers crossed for a benign pathology report! How we all hate waiting for those danged things! I hope you've been able to get your mind off it some this weekend. I'm trying to get up the nerve now to schedule a PM, now that my gyn problems seem no big problem! Once you meet with the docs at NOLA (Center for Restorative Breast Surgery), you'll feel a lot better. Really. My recommendation is that you try to have either Dr. DellaCroce or Sullivan as your primary surgeon - both have the most experience there, by thousands of surgeries. And again, thank you so much for the info you've passed on, and especially the latest recommendations from Sloan. That has helped me a lot! Oh, like Cornellalum, I want to know what a PEM is too! Cornellalum, I PMed you.

  • OG56
    OG56 Member Posts: 897
    edited February 2010

    All I know is that a PEM is some kind of imaging machine, I too am trying to find out more about it, supposedly less false positives than the MRI.  I seem to have slept the weekend away, just exhausted. I don't know how I will get up and go to work tomorrow but I guess alot of coffee will be involved!

  • cornellalum
    cornellalum Member Posts: 191
    edited February 2010

    OmahaGirl - coffee works for me, although this giant "blizzard" that we got here in Virginia may keep me home for the morning.  Being originally from New York, I always laugh at the panic in the streets around here over six inches of snow, but actually, they don't have the equipment here to clear the streets, and then it all freezes solid, and no one can move on ice (even in the Great White North).  So I will cut these Southerners some slack on that one.

    Come to think of it, I do remember hearing about some new type of imaging that was supposed to be better then MRIs, but when I asked about it, there was a general response of "let's wait and see."  So I think it's REALLY new (and probably REALLY expensive).  Wonder if it's even covered by insurance yet?  Well, let us know what you find out.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2010

    Hi Pleo pals

    I received my pathology results yesterday from bilateral mastectomy and SNB and thought you might be interested. SNB results were negative - yahoo!!!!!!!!!!, the right breast that had the PILC, PLCIS and LCIS had no more PILC, but it did have more PLCIS.  The left breast had only fibrocystic changes.  I was so relieved that they didn't find anymore invasive and that it was negative SNB.  The surgical oncologist that I have been seeing doesn't believe it will be necessary for me to do chemo and/or rads, but she said that will be the medical oncologist call.  I will see him on Thursday.  At least he is in my own city, so I won't have to travel the 1000 miles to see him.  I am not sure what his recommendation is going to be?????? due to the pleomorphic nature of this. I just want this done and to be able to move on with my life, not to mention reconstruction. I have an appt with surgeon for DIEP in March, but first need to find out if there will be any further treatment needed.

    Omahagirl hoping you get good results from your biopsy. I know what you mean by having all the poking and proding done since last June.  I hopefully have had my last "cancer" surgery.  The next surgery I have will be for reconstruction.

    Take Care

    Cathy

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