DCIS

Options
jmilton
jmilton Member Posts: 18
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hi, I am new to this group.  I was diagnosed with DCIS in my right breast, with minute focus of DCIS with cribiform and papillary pattern. Necrosis present with calcifications. Estimated low to intermediate grade tumor with no evidence of invasion. Treatment options presented to me were a lumpectomy with radiation or mastectomy.  Because of a bone issue, I could not do the radiation, so I had a mastectomy of my right breast on Sept.2.   The pathology report on the breast came back with no sign of DCIS, so apparently the stereotactic biopsy pretty much sucked all of it out.  The thing I am having a problem with, along with the removal of my breast, is if it was all gone, was this really necessary?  I am 51 and had been on Premarin for around 21 years due to a hysterectomy. The oncologist told me that the Premarin may have contributed to a very small part of it.  Any imput on this is appreciated!

· Share on FacebookShare on Twitter

Comments

  • ej01
    ej01 Member Posts: 155
    edited October 2011

    I had a lumpctomy a few weeks ago which showed no sign of DCIS (after needle biopsy showed DCIS), so I kind of understand where you are coming from with the question 'was this really necessary?'  (although that I fully understand that a mastectomy is a much bigger deal than a lumpectomy) That said, I keep on coming back to my original thoughts/risk analysis when I made my decision to proceed.  We make the decisions we make based on the best possible information available at the time.  If I get frustrated, I get frustrated not with myself for my decision, or not my doctors for recommending the current standard of care, but by the fact that all of the medical research out there they still do not have a handle on the 'appropriate' way to treat DCIS. So the generally accepted standard of care is to always overtreat.    I wish there was more established science with the 'montior and wait' approach...unfortunately there is not.

    · Share on FacebookShare on Twitter
  • Emaline
    Emaline Member Posts: 492
    edited October 2011

    I think we make the best decisions we can based on the information that we have.  Mine was grade 2 but over 7cm.  I had an excisional biopsy and they did not clear margins.  My BS was sure he could go in and redo the lumpectomy and get clear margins but he was overrode by the tumor board, who recommended a MX.  He did say afterwards that there was some more DCIS, only in that area, but he expected that.  He didn't say "I could have cleared this with redoing the excisional biopsy" but I know he was thinking it :)   So yeah I have wondered about it as well but I went with the option that was most my comofort level and I don't regret it.

    · Share on FacebookShare on Twitter
  • smbrown0810
    smbrown0810 Member Posts: 2
    edited October 2011

    Hello, I have a new diagnose of DCIS in my left breast, it was not a lump but calcium calcification, my doctor stated that is was a stage I, I was just given this news on 10/06/2011, I haven't seen my pathology report yet however I will be seeing the surgeon on Tuesday the 11th, right now my whole thought is have a double mastectomy, I don't want to have the chance of the cancer reoccurring. My husband has prostate cancer, battleling it now since 2010 he has a grade 9 with mets, my children are handle ling it, as far as I can tell. Any suggestions ? Any thoughts, before I see the surgeon tomorrow?

    · Share on FacebookShare on Twitter
  • mom3band1g
    mom3band1g Member Posts: 817
    edited October 2011

    DCIS is always stage O...are you sure he said DCIS and not IDC?  A mast is a huge surgery.  Please know what you are getting into before you decide.  If it's DCIS you have time.  How big it is will also help with your decision.  sorry that you are having to deal with this on top of a sick husband.

    · Share on FacebookShare on Twitter
  • leeinfl
    leeinfl Member Posts: 317
    edited October 2011

    Shannon - yes, DCIS is always stage 0, maybe you are DCIS, Grade 1?  DCIS is divided into different types and grades based on how the cells react and grow.  You will know much more when you get the path report.  I had DCIS and decided on a double mastectomy based on my family history and because my DCIS was wide spread in my breast.  A lumpectomy would have basically been half of my breast anyway.  I've never regretted my decision.  With DCIS you do have time, so make a list of questions, do your research and do what you feel is right for you.  This site might help explain the grades & types of DCIS

    http://dcis.info/biopsy-examination.html

    as well as the DCIS threads on here.

    If you do decide on a DMX, please research your reconstruction options carefully.  Feel free to PM me for any questions, both with the DMX as well as reconstruction.

    I'm sorry you have so much on your plate.  Hugs & best wishes!

    · Share on FacebookShare on Twitter
  • cycle-path
    cycle-path Member Posts: 1,502
    edited October 2011

    DCIS is sometimes called Stage 1 when there's a microinvasion. In this case, basically what's going on is there's a larger portion of DCIS and a small portion of IDC. Docs commonly call this "DCIS Stage 1" even though that's technically not correct. Pure DCIS is always stage zero.

    Elsewhere I explained it like this. If someone gave you a big oatmeal cookie and there was one chocolate chip in it, would you call it a chocolate chip cookie? No, you would call it an oatmeal cookie. 

    · Share on FacebookShare on Twitter
  • SAOIsenberg
    SAOIsenberg Member Posts: 429
    edited October 2011

    jmilton - so hard to know. As others have said, the standard of care is over-treatment at this point. I chose a BMX after a tiny spot of DCIS was found in my right breast, but I have a personal history of breast cancer. Mine too was taken out completely on biopsy, but my path showed there were loads of atypical cells in both breasts - confirming that this was a good decision for me. I will tell you that lots of times there is IDC lurking around DCIS points that they don't find on biopsy, and now at least you're now sure that's not your situation . . . might be some comfort. Losing a breast (or two) is NOT easy. You made the best decision you could at the time.

    Shannon - you have time, even if it's IDC and not DCIS. Don't rush this decision - even if you ultimately choose to have a bilateral, you want to know what you're in for. It's NOT easy. You have a lot on your plate with your husband's health status and your kids. The risk of recurrence for DCIS and even for IDC that's early stage is quite low, even w/lumpectomy + rads. Get all the info. before you jump to BMX! I had lumpectomies in '01 and never regretted it. Would've gone that route this time too had my oncologist not been worried about lots of other things going on in my breasts and a high likelihood of a new invasive dx.

    Good luck to you, both - hang in there!

    Sarah 

    · Share on FacebookShare on Twitter
  • smbrown0810
    smbrown0810 Member Posts: 2
    edited October 2011

    I want to thank you all for posting a reply, I couldn't stop crying, thank you for all the support and facts, I see my surgeon in 3 hours and I do have alot of questions already written down, three pages. Again I can't say thank you enough- mom3band1g,leeinfl,cycle-path, and SAOlsenberg... LOL

    · Share on FacebookShare on Twitter

Categories