Pleomorphic LCIS

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2009

    cathy--I would agree with asking them to mail or fax the results to your primary doctor--there's got to be a way so that you don't have to keep traveling back and forth. And yes, 3 weeks is way too long, they usually have the pathology results in a week or less--keep calling and bugging them till they have to give in and tell you! As always, praying for good results for you soon.

    anne

  • leaf
    leaf Member Posts: 8,188
    edited November 2009

    Yes, agree with mack and awb, maybe your facility will be willing to fax it to your GP?  We all want to be ready for whatever is ahead on our path.  That's been going on for many thousands of years.  Best wishes for a speedy, but thorough path report.  We are here for you.

  • OG56
    OG56 Member Posts: 897
    edited November 2009

    Cathy,

    Hope this finds you feeling better today and know that Sloan does a pretty fast turn around and the full results took 3 weeks. I did get a preliminary in two. Hope your results come back soon.

  • OG56
    OG56 Member Posts: 897
    edited November 2009

    Don't know if any of you have read this, but it comes out of  M.D. Anderson this year.

    http://nurse-practitioners.advanceweb.com/Article/Clear-and-Present-Danger.aspx

  • cleomoon
    cleomoon Member Posts: 443
    edited November 2009

    Linda, Thanks for that article. It was very good at explaining LCIS's complexities :)

  • Minnesota
    Minnesota Member Posts: 923
    edited November 2009

    Thanks a lot, Linda. It seems we are getting a bit more clarity about PLCIS. Helps with our decisions.

  • cornellalum
    cornellalum Member Posts: 191
    edited November 2009

    I have a question for everyone with PLCIS.  I was diagnosed with PLCIS and LCIS after my lumpectomy two weeks ago. My pathology report identifies an "area of dense, white-tan fibrous tissue with foci of hemmorrhage, areas of necrosis and areas with mulitple cysts."  It said the area was 1.5 x 1.3 x .4 cm.  Can I assume that this is the PLCIS?  Did anyone else have a mass like this?  It doesn't sound like LCIS, since I thought  that you can't "see" LCIS.  This mass went to the margin on one side, which concerns me. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2009

    it  could be either the PLCIS or the LCIS;  LCIS is not always "seen" on mammo/US/MRI, but it can be  detected pathologically in the tissue samples that they remove and review microscopically.

    Anne

  • Minnesota
    Minnesota Member Posts: 923
    edited November 2009

    Cornellalum (BTW, my son is at Cornell!),

    My mass was described as "an ill-defined gritty white tumor proximally 4.5 X 2.5 X 2 cm. Extensive LCIS, classic type, and focal carcinoma in situ with indeterminate features with intraluminal necrosis and focal calcifications (PLCIS), involving irregular adenosis." And yes, apparently it can be seen, even with the naked eye and by the surgeon.

  • Lori51
    Lori51 Member Posts: 5
    edited November 2009

    I was told I had ALH on a stereotactic biopsy in August, and LCIS on an excisional biopsy in Sept. The oncologist advised me to go on tamoxifen. In April,I have a second opinion at Sloan Kettering's Breast Surveillance Center for high risk women. You mentioned something about their policy on tamoxifen. I assumed they would also suggest tamoxifen since that is what it seems like everyone does in this situation. I don't really want to take it, but I am a worrier. I am 51 with no family history of bc. What do you know about Sloan? Thank you for your help.

  • Minnesota
    Minnesota Member Posts: 923
    edited November 2009

    Lori51,

    Omaha Girl has been going to Sloan Ketterling. The doc who is possibly going to do the research on this animal is from there. I was on tamoxifen for 3 years, then switched to Evista, which I now have stopped due to uterine thickening and ovarian cysts. Perhaps you could PM Omaha Girl with your questions.

  • Lori51
    Lori51 Member Posts: 5
    edited November 2009

    Thank you for the info, Minnesota. Hearing about your outcome with tamoxifen is what makes me not want to even consider taking it. The local oncologist seemed shocked when I said I wanted to think about it.

  • Minnesota
    Minnesota Member Posts: 923
    edited November 2009

    Lori,

    Well actually I'm glad I was able to take it as long as I did. I feel like it gave me extra protection, eventho I wasn't able to take it the whole 5 years. I really had no bad side effects from it, up until I had a period after not having one for several years. It had stopped the same month I started the tamoxifen. I understand your having reservations about taking it, but I did have symptoms, once it started causing trouble - and as usual for me, I'm in the very small percentage of women that have gyn trouble taking it.

    Eve

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    Hi All

    Back from my latest trip (again) and  the results are in and I regret to say that it is just going from bad to worse. I really don't know how much more of this I can handle!  I was trying to be optimistic and think that she was able to get clear margins and nothing else would be found.  I was wrong.

    First the doctor said that she was not able in her attempt to get clear margins on the PLCIS.  She said the PLCIS was extensive throughout the sample. There is not clear margins on the outside and the bottom of the breast. She also kept referring to the PLCIS as though it were DCIS, as she said there is not enough information about PLCIS.  She also mentioned that my case was taken to the tumour board and that is how they decided it should be dealt with (like DCIS)

    Secondly, she said found within the PLCIS, there were two areas of Invasive Lobular Carcinoma. One of them measured 5mm and one measured 1mm.

    She said more surgery is required as well the nodes need to be checked.  Although she did say another lumpectomy could be done to try to get clear margins, she seemed to be leaning more towards unilateral mastectomy.  Depending on if there is anything found in the nodes, that would determine the next step. When I asked about doing bilateral, she still seems to think unilateral would be all that is required at this point, of course unless I wanted it. She also said that immediate reconstruction may not be an option, depending on what the result is of the sentinel node biopsy.  If radiation were to be required, this would not give the best result on reconstruction. When I asked how quickly I should do the next step, she said that technically it (the invasive) is out, so it should be dealt with, and that 1-2 months would be reasonable. She could do either lumpectomy or mastectomy in January, but if I wanted reconstruction that would take longer to coordinate.  It would likely be a couple of months to be able to coordinate both surgeons schedules.  That just seems to long to me.  What if they find that it has gone into the nodes? I wonder how quickly other women that are diagnosed with ILC have their surgeries? Do they have reconstruction at the same time? What do I tell my kids?  So far I have told them I have breast cancer, but I also told them the doctor would be taking it out with the surgery.  It just seems like this is never ending. I am so scared and I don't want to scare them anymore.  I guess I will have to move over to the ILC thread and ask alot of these questions.  But I probably will hang around here as well, due to having the PLCIS as well.  I don't even know where I belong anymore.

    Cathy

  • Minnesota
    Minnesota Member Posts: 923
    edited December 2009

    Cathy,

    So sorry you're having to deal with this. Many of us have been in similar situations - it sucks. But you will get thru this! I think you need to take this one step at a time and try not to get ahead of yourself with worrying - easier said than done. Also, try not to feel too rushed. You have time to think thru your decisions. Some need to be made sooner than others -  others you can delay until you feel less overwhelmed. Some ladies chose immediate recon and some delayed. You could have delayed DIEP recon, and that would use tissue from your abdomen, so radiation would not impact your result. I'm going to paste a link to a recon surgeon's forum who could answer all of your questions in a very thorough and thoughtful way. Also, there are many questions posted that have been already asked, and you will find some of them helpful to your situation. He's a top-notch surgeon, and he will answer regardless of which doctor you are using for your surgery - doesn't have to be him.

    http://members.boardhost.com/plastic/index.html 

    Please continue with us on this thread, too. You can't get too much support, and we all care what's going on. The kids are hard. I don't know their ages, but I think you can add that you need to have some more treatment just to be sure that they kill all those bad cancer cells so they don't bother you any more. I can so relate to the feeling that this is never-ending. You feel like you just want to curl up in a ball and sleep for a hundred years - at least I did - and still do sometimes...

  • leaf
    leaf Member Posts: 8,188
    edited December 2009

    Thanks for the link, Minnesota!  I really learned from lurking!

    Best wishes, Cathy.  We all are reaching out a hand to you.

  • OG56
    OG56 Member Posts: 897
    edited January 2010

    More up to date information on LCIS, it is in power point and a little hard to read but very interesting.

    http://www.sawi.org/pdfs/AndersonLobularCarcinoma.pdf

    I found it a little concerning for us with pleomorphic lcis.

  • balsie
    balsie Member Posts: 391
    edited January 2010

    Hi everyone ... I just came upon this thread..hadn't seen it before.  Very interesting reading this.  I was diagnosed after I had breast reduction surgery with Invasive lobular cancer.  Because they really couln't pinpoint exactly where the tissue came from I had a bilateral mas.  I feel fortunate to have had this because they did find tissue in the other breast that was most likely going to become cancer at some point.  I also had recon. surgery and will have the final implant put in on Jan 12th. I went through chemo and am now doing zometa and arimidex.  The SE  from zometa were horrible but I think will only last for a couple of days.  So far arimidex is going ok.

    I was told that I was "lucky" to have found this during a reduction sugery because it may not have shown up for a long time on a mamo.  which I had 1 month before my reduction surgery and nothing did show up on.  Now is it true that some doctors do not consider ILC cancer? Can anyone shed some light on this?

    Thanks

    Balsie~

    P.S. Minnesota...what part of MN are you from....I live in northern MN

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

    ILC is definitely cancer.  Classic LCIS is not considered cancer by most oncologists.  I don't know about pleomorphic LCIS- hopefully others will post.

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

    Hi

    Unfortunately in my course of dealing with this for the last 9months I have climbed the "lobular ladder"

    March I was diagnosed with ALH (stereotactic biopsy),was told not breast cancer but put me at higher risk.

    June(incisional biopsy) diagnosed with classic LCIS, was told not breast cancer but put me at higher risk.

    July and October had a BIRAD 5 MRI. October (MRI guided biopsy) diagnosed with PLCIS and was told this is breast cancer and must be treated like DCIS. The area of PLCIS has to come out and it has to come out with clean margins. Did not get clean margins.  

    November (excisonal biopsy) diagnosed with 2 areas of PILC.

    So now I will be having bilateral mastectomy Jan 12, where they will be doing a sentinel node biopsy to see if it has gone to the nodes what and if further treatment will be required. In my case the classic LCIS was a red flag that there was more going on and most ILC is not detected until it is much larger. So they tell me I should consider myself lucky that it was found.  Funny I don't feel very lucky right now!

    I dont' want to scare anybody, but to share my story and how things have progressed.  LCIS needs to be taken more seriously.  I had too many doctors that just brushed it off, I think they are thinking about it differently now. Obviously I am biased.

    Cathy

  • macksix6
    macksix6 Member Posts: 201
    edited January 2010

    Cathy it is so very important to get your story and others out there. In your case your doctors knew very little about PLCIS, like many doctors. You became your own advocate and helped educate your doctors. Good luck with your surgery on the 12th.

  • cornellalum
    cornellalum Member Posts: 191
    edited January 2010

    Cathy -

    I am thinking of you. For what it's worth, I think you are doing the right thing.

    I am still talking with my doctor about my PLCIS.  I had originally scheduled a re-excision on the 11th to try to get clear margins, but I have cancelled it. I am probably headed for a mastectomy as well.  I am also waiting for a second (third? fourth?) opinion from a doctor from Sloan-Kettering.  All my pathology slides, plus the MRIs and mammograms were re-read at Brigham and Women's in Boston, and then the information was sent to this doctor, since he apparently has some experience with PLCIS.  I believe that Omaha Girl's doctor is also from Sloan-Kettering.

    Omaha Girl's link was yet another piece of information showing that PLCIS is potentially nasty stuff. I am going to get another appointment to see my BS (I forwarded him the link from Omaha Girl).  One way or another, we are going to start getting these doctors to start learning about PLCIS, and addressing it. And in the meantime, we need to make the right decisions for our health, and our lives.

    Chris

  • Minnesota
    Minnesota Member Posts: 923
    edited January 2010

    Thanks for the link Omaha Girl, I will be reading it today. And thanks to all of you in sharing your information. Having you all here helps keep me sane. Chris, please update us when you get your umpeenth opinion. And Formykids, we'll keep you in our thoughts and prayers on the 12th.

  • Minnesota
    Minnesota Member Posts: 923
    edited January 2010

    Wow! Great link and summary of the studies. I especially liked the smoking gun graphic next to one of the slides on PLCIS...

  • cornellalum
    cornellalum Member Posts: 191
    edited January 2010

    Yeah - I loved the smoking gun too.  (Some days I feel like it's pointed at my head. Frown)  I am interested to hear what my BS has to say about it. I have another appointment with him on Thursday.

    My cousin has her lumpectomy surgery tomorrow.  So any good thoughts going her way are appreciated.

  • Minnesota
    Minnesota Member Posts: 923
    edited January 2010

    Balsie,

    Sorry, I didn't see your question last time. I'm from St. Cloud. We get up north alot. Especially along The Shore! Where in the northern part of the state are you?

    Eve

  • balsie
    balsie Member Posts: 391
    edited January 2010

    Hey Minnesota~

    The Shore!  I love it!! We go there a lot.  I live in between Hibbing and Grand Rapids. 

    Hope all is good with you today!

    Warmly,

    Balsie~

  • OG56
    OG56 Member Posts: 897
    edited January 2010
    Well here I go again....had MRI last Thursday, today the Dr. called and she said there is another "area of concern" in my left breast. Scheduling an MRI biopsy as I type. I am so disgusted, I don't know what to do with myself.Cry
  • Minnesota
    Minnesota Member Posts: 923
    edited January 2010

    Omaha Girl,

    I'm SO sorry! When does this crap end?! I have been both disgusted and "losing it" myself alot lately. I sooooo want to just get on with my life - sick of waiting for lab results, sick of hearing creepy things from lab results, sick of no one being able to tell me "what to do" except in little increments, like, another test... When will your biopsy be? This week? I'm on my way over to talk with a genetics counselor - want to rule out that component of this. Might stop, while I'm over there, and see if I can bug the doc who did my D&C Friday to find out what the heck she thinks is going on. I'm sure that will earn me lots of brownie points! I keep imagining her finding "not what she expected" like the Alien shot his head out at her from between my legs when she sucked out that lining! Hang in there, Linda. We'll all get thru this!

  • OG56
    OG56 Member Posts: 897
    edited January 2010

    Thanks, I appreciate it, and I laughed out loud when I visulized the alien!

    I having the biopsy a week from today, and this will be #5 since June!

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