LCIS Denial?

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EmmaW
EmmaW Member Posts: 20

Hi-

I think I might either be in denial or just the only voice of reason.

I went in for a mamogram and ultrasound for a lump that I felt. The lump turned out to be nothing, but the ultrasound showed two small suspisicious areas. I had both areas biopsied and one came back with Pleomorphic LCIS. 

I met with a surgeon who wanted to follow up with an MRI before scheduling surgery to remove the LCIS.

The MRI showed a 9 centimeter suspicious area adjacent to the original nodule. The surgeon ordered two more biopsies of that area. Both came back as more of the pleomorphic LCIS. The surgeon is concerned that there might be invasive cells somewhere in that 9 centimeter area. The report from the MRI said that it looked suspicious for ILC, but also that LCIS could look the same.

Meanwhile, I was told that the area had to come out. Since it is so large, though, the recommendation is to remove the entire breast.

From everything I have read, LCIS is not even cancer. Isn't this recommendation a bit invasive? I feel like the surgeon is being crazy alarmist. But then I'm thinking, maybe I'm just in denial?

Anyone have anything similar like this happen? How likely is it to have LCIS turn into invasive cancer? Anyone have such a large area of LCIS?

Thanks. I'm going a bit crazy here.

Comments

  • april485
    april485 Member Posts: 3,257
    edited April 2014

    If the surgeon is recommending the breast come off and an MRI says "suspicious for ILC" I would opt for the cautious route. As invasive a surgery as a mastectomy is, it could save your life if ILC is present. ILC is very sneaky from what I have read and so with that said, I would opt for the surgery. 9cm is a big area so that is why the mastectomy over the lumpectomy has to be the way I suspect. Best to you whatever you decide to do.

  • Smitty333
    Smitty333 Member Posts: 130
    edited April 2014

    I have read that pleamorphic LCIS is treated like a high grade DCIS. I have LCIS with necrosis and am very confused about my diagnosis as well. I have a feeling that treatment would change from one DR to another. Never hurts to get a second opinion just to ease your mind.

  • tlr1128
    tlr1128 Member Posts: 4
    edited April 2014

    I have been going through this myself somewhat recently.  I had an abnormal mammo which got me to a biopsy which showed LCIS.  Surgeon wanted clear margins so I had a lumpectomy of the area which showed ADH and pleomorphic LCIS.  The frustrating thing is there is so little information on this subject.  I saw an oncologist after just the diagnosis of LCIS and he gave me the option to decide how I would like to proceed but once the report came back pleomorphic he felt that my best choice would be bilateral mastectomy.  Having gone through the mammo and extra images and then biopsy, MRI, and lumpectomy my tolerance was at an all time low.  I felt that I was either waiting to have a procedure or waiting to get the results.  I wanted off the roller coaster!  My BMX was March 12th and I am happy with my choice.  I have been back to work for two weeks and doing great!  The path report came back that I had LCIS on the other side also, which had gone completely undiagnosed to that point.  I feel blessed to have the opportunity to make this decision and not have to have chemo or radiation.  I am in complete awe of these women that must have further treatment.  They are so strong.  I did what I was comfortable with and felt was the best choice for me and putting this risk behind me!

  • EmmaW
    EmmaW Member Posts: 20
    edited April 2014

    Thanks for the responses. I guess I keep thinking that there is a chance that this LCIS will never even become something and so I feel like I am going into major surgery for what could be nothing. I'm not sure how to balance that. Also, I'm not really being given a choice (though, yes, I am definitely going to get a second opinion) because they cannot remove 9cm without removing the whole breast.

    *sigh* 

  • lemon68
    lemon68 Member Posts: 684
    edited April 2014

    Hi Emma

    I had a biopsy and it showed I had LCIS, then lumpectomy and tucked deep within a 2mm area of ILC. I am having a BMX, its almost 6 months later. I wouldn't have considered it at diagnosis but now I know its right for me. Its just too dang sneaky. Go get your 2nd opinion and keep reading, education is your best defense. Your in the right place. My oncologist said it grows slow.. I don't think you need to rush into anything your not sure about.

    all the best to you.. I know its so hard ((HUGS))

  • leaf
    leaf Member Posts: 8,188
    edited April 2014

    This series of slides (2012) gives the best outline I've seen about the different types of LCIS.  As always, just about everything to do with LCIS is controversial.

    http://www.ucsfcme.com/2012/slides/MAP1201A/18YiChenWhenIsLCISClinicallySignificant .pdf

  • Smitty333
    Smitty333 Member Posts: 130
    edited April 2014

    Does anyone have any information on LCIS with necrosis?

  • leaf
    leaf Member Posts: 8,188
    edited April 2014

    Well, although this may include LCIS variants that do NOT contain necrosis, this sentence in this abstract says

    Seven of the 10 patients who had PL/DLCIS without invasion underwent
    lumpectomy or simple mastectomy. Six of these patients had no evidence
    of disease in follow-up periods ranging from 4 to 32 months; the seventh
    patient developed recurrent disease 12 months after undergoing
    lumpectom
    y. 

    http://www.ncbi.nlm.nih.gov/pubmed/12379750

  • girlygirl13
    girlygirl13 Member Posts: 9
    edited May 2014

    Hi Emmma , i am new to this discussion board. I agree with the others there is not a whole lot of solid reccomendations or research regarding treating Lcis. You can ask three different Drs and get tree different opinions :  (  I am post bilateral prophlactic nipple and skin sparing mx i had in feb. I made this decision after four different opinions were weighed carefully. i have a three family members , two who died of breast ca. I am brca neg. but still chose to do surgdry cause i had pleomorphic lcis. after pathology came back it showed 6cm area removed of pleomorphic lcis on left breast but also still had positive margins and nipple involvement in left breast and extension of plcis to antetior supetior margin. it was reccomened by my oncologist that since i had greater than 5cm area radiation may be needed. ( devastated i never even considered this. i thought i was already being extreme).  after talking with radiation md and my general it was decided that i would go back to clear my margins and take nipples. i am now a little over a week post op and i just got pathology report. my surgeon said it was good news but as i read it besides nipples area with plcis not even taken out!!!! my point is even though i thought dking madtectomy would give me the piece of mind i needed i feel like i am still in same boat. if anyone else has had this experience please let md know??

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