Bilateral DCIS at original diagnosis

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Jordymom
Jordymom Member Posts: 114
edited February 2015 in DCIS (Ductal Carcinoma In Situ)
Bilateral DCIS at original diagnosis
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  • Jordymom
    Jordymom Member Posts: 114
    edited January 2008

    Just trying to see how much of freaks my boobs are.

    Any one else found to have DCIS on both sides silmultaneously?  Or did you find site in second breast shortly after first?

    My diagnosis on left only occurred because of MRI, did not show up on mammogram.  That's not comforting.

    Let's hear your stories.

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  • determinedmom
    determinedmom Member Posts: 276
    edited January 2008

    I had DCIS x2 rt breast; had MRI to help decide weather or not to do bilat. mast. MRI showed two poss. invasive CA, one each breast which didn't show on mammo. Had bilat. mast., however, no further CA was found, just a lot of precancerous tissue in both. Have they recommended further surgery and/or radiation? Just remember, although it's unfortunate you had to join us here, at least your diagnosis is very early and VERY TREATABLE. Hang in there.



    Best wishes,

    Jeanne

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  • betsy13
    betsy13 Member Posts: 76
    edited January 2008

    Hi,

    I was also 46 when dx with DCIS stage 0 grade 2 with some prominent central comedonecrosis in Jan 07..I finished rads in May had a 6 month mammo in Aug. which showed a punctate calcification in the area of the original malignant cluster....BS tried to do stereotactic bx but could not ID so could not get it so did a short term follow up as well as my annual bilateral mammo in Dec (Rad was a pompous a** and didn't even see the calc until I pointed it out in the Aug report he then looked at Aug films and decided to do mag views, which had been recommended...and saw it....asked me if I was sure I had clean margins...his report was Bi-rad 3 as well as a comment "continued low suspicion for malignancy...hey I want no suspicion....AAARRRGGG) OK so anyway saw my BS for follow up and she feels calc is ok b/c it is stable with no apparent change, but hard to see b/c in scar tissue and I have very dense breast tissue....also I have new scattered and grouped microcalcs in B breasts although no suspicious clusters as well as my usual cysts.....she is sending me for bilateral MRIs next week (I did not have MRIs before my lumpectomy)she also ordered a bilateral mammo for 6 months to watch calcs.....I am nervous, but also glad that maybe I will finally get an answer no matter what it is.....the waiting and not knowing is doing me in:) has anyone had experience with MRIs after rad and will DCIS that is "sterile" (one of the rad dr.s words) show up.....also I know that calcs don't show up on MRI, so how does DCIS??I've had to wait 3 weeks b/c of a hernia repair (& getting uterine polyps removed) b/c they have to wait 8 weeks post-op b/c of mesh, I had surgery 11/20......I know I have been lucky to have found mine early and hope that continues, but no one ever tells you about the mental aspect of watching & waiting.....And I am struggling with learning to be patient:)

    Betsy

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  • Jordymom
    Jordymom Member Posts: 114
    edited January 2008

    Betsy,

    My course has been a little unusual.  After the initial dx of dcis in 9/07 on the right I underwent a MRI.  This eventually led to biopsy of suspicious area on the left.  Bango, DCIS on the left (never seen on mammogram).

    So now I have bilateral DCIS diagnosed simultaneously with no clear margins.  However, I may still attempt for more lumpectomies to get the clear margins and then continue with radiation.

    The MRI is a double edged sword.  I have undergone a couple more core biopsies with negative results, so they can give false positives.

    I understand mammogram following radiation can show a bunch of post radiation stuff.  Pretty hard to deal with but hopefully your MRI will answer the questions.  And yes, in my case, DCIS on the left did show up on the MRI (thankfully).

    PM me if you have questions.

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  • Erica3681
    Erica3681 Member Posts: 1,916
    edited January 2008

    Jordymom,

    If I'd had an MRI of my left breast after DCIS plus tiny invasion was found in my right breast, I might have wound up in exactly your situation. However, no MRI was recommended at the time (2003). I had a lumpectomy and radiation of my right breast.

    Three years later, calcifications showed up on a mammogram of my left breast. Biopsy showed DCIS. After two wide excisions, it was determined that the DCIS was so extensive a mastectomy was required. I wound up having bilaterals--I wanted to do whatever possible to prevent a third occurrence.

    If an MRI had been performed initially, I suspect the left-breast DCIS would have already been there, but much less extensive, maybe making lumpectomy a possibility. But I might have opted for bilateral mastectomies in any case. I'm just grateful mammograms caught both cancers at a very early stage.

    You are lucky your second DCIS was caught by MRI. My breast surgeon told me MRIs often miss cancers that are still contained in the ducts.

    Barbara

    BreastFree.org 

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  • 3girls4me
    3girls4me Member Posts: 196
    edited January 2008

    In my case, I found a lump that was mammogramed, it many angles (ouch!) and determined to be a benign fibroadenoma.  I was assured it was benign, but they wanted to do a needle biopsy just to be sure.   So I did that, and the lump WAS benign, but there were some cells "around" the lump that were ADH.   Since ADH can look like DCIS, had to have lumpectomy.  So then had lumpectomy, and BANG!  It was DCIS.  Had 2 more lumpectomies without clear margins, and ultimately had bilat w/expanders in September 07. 

    I also had ultrasounds, and NONE of this showed on mammogram or ultrasound.   And in the final pathology of my "good breast", there was an area of ADH that was "approaching DCIS".  The other breast had multiple areas of DCIS. 

    So, obviously, mammograms or ultrasound did me no service whatsoever.  My breasts were "extremely dense", as is true of younger women who get mammograms (I was 36 at the time).  I could have had an MRI, but knew of the false positivies as well, and had already decided bilateral was way to go.  The only way mine was found was by the microscope!

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  • Noni
    Noni Member Posts: 327
    edited January 2008

    A mammogram early last year showed calcifications in both breasts.   I had a baby the year before and breastfed, so we kinda chalked it up to that but I was instructed to come back for follow up mammograms every six months.

    The week before Thanksgiving of this year I went in and the rad was concerned with what she saw and suggested a stat biopsy in my rt breast.   The calcifications in the lt breast hadn't changed and were much less than the rt breast so she didn't think a biopsy in both was necessary.

    I was dx with DCIS on 12/5/07 and was sent for an MRI where they found what was in the lt breast to be more concerning. I had the option of another stat. biopsy but I decided instead on a bilateral mastectomy.  

    Personally I didn't want to bother with the worry of possible multiple lumpectomies, radiation and fear that I'd have to deal with the 'what ifs' every six months. I understand that some may feel my decision is extreme but I've got a busy toddler to look after and my #1 priority is taking care of my family.  I also know that I'm a wimp when it comes to hospitals, needles and pain so I'd rather get it all over with at the same time!

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  • betsy13
    betsy13 Member Posts: 76
    edited January 2008

    Hi Jordymom,

    Thanks for the info..and sharing your story.....I am prepared for whatever the MRIs show because of all the kind people on this site....but also optimistic:) Also I did send you a PM...let me know if you didn't get it....as I have sent 2 PMs to other people and have not gotten a response back....so not sure I am doing it right:)

    Betsy 

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  • Jordymom
    Jordymom Member Posts: 114
    edited January 2008

    Betsy,

    Got your PM and I sent a mail back to you.

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  • jade56068
    jade56068 Member Posts: 584
    edited January 2008

    Hi

    My dx was DCIS in my left breast.  When I had my bilat mast, they found some in my right breast too.  My ps told me that the calsifications would of been really hard to find b/c my "healthy" breast was filled with fibrodes.

    I am a lucky women:<} now, cancer free and on my way to having boobs again....who knew I would miss them as much as I do.

    j

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  • SusanneD
    SusanneD Member Posts: 1
    edited February 2008

    I was diagnosed with DCIS in my left breast -- and the day before my lumpectomy (was supposed to be 2/15), the MRI results came back with 2 "suspicious DCIS" spots in my right breast. Is this common ? Just want others opinions here -- would you recommend mastectomy ? Or hope for the best with a bunch of lumpectomies ? I am now scheduled for 3 lumpectomies on March 3 -- and my surgeon knows that I am ok with a mastectomy if needed... I don't want to be too aggressive, but I cannot imagine living with this worry for years. Opinions ?? Thanks !

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  • Jordymom
    Jordymom Member Posts: 114
    edited February 2008

    Susanne,

    First an MRI can show many false positives.  I do have confirmed bilateral DCIS and 2 MRI's showed additional suspicious areas.  Once those areas were actually biopsied it was determined they were not in fact more DCIS (mostly ADH).

    No doctor I have spoken with would automatically recommend a mastectomy just because you have bilateral DCIS on presentation.  I have had 9 procedures (3 core biopsies, 3 excisional biopsies, and 3 wide exicsions) on both breasts since 9/07.  Has this been hard?  You bet.  But I wanted to answer the question about what exactly the MRI saw.  Everyone was pretty convinced the MRI was showing more tumors, but apparently it was a false positive.

    I finally have clear margins on the right after an exicisional biopsy and two wide exicsions (plus a core and excisional biopsy of the false MRI area).  On the left I have a close margin after an excisional biopsy plus one wide excision (and one core biopsy of the false positive area) but will be discussing the margin width further with radiation oncologist.  If okayed, I will likely move forward with bilateral radiation and Tamoxifen.

    None of the decisions we face are easy or not without consequences.  My path is certainly not the path many women would choose. 

    You have time to explore all the options and don't forget when the physician makes a recommendation to ask 'why' they are giving the advice.

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  • greekchick
    greekchick Member Posts: 2
    edited February 2015

    The mamo and biopsy found DCIS grade 3 in right breast and MRI showed in left breast as well

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2015

    Dear greekchick, Welcome to the BCO community. This is a great place to receive information and support through the shared experiences of others. Please let us know how we can support you. Stay connected. The Mods

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  • angmom41
    angmom41 Member Posts: 27
    edited February 2015

    Hi greekchick - I was diagnosed with multifocal high-grade DCIS after stereotactic biopsy of 2 areas in my left breast. One area is microinvasive. My only option is MX for the left breast, but I was having trouble deciding whether to go bilateral. My surgeon suggested to wait until after the MRI and meeting plastic surgeons to decide. The MRI was needed to determine if I was a candidate for nipple-sparing surgery. The MRI found another suspicious area in the right breast, 8mm that was not well seen on the mammogram.

    Are you getting a biopsy of the other side? If so, good luck. Since I need a MX and my only reconstruction options at this point are implants, I have decided to not have a biopsy of the right side, to go ahead with bilateral. So I won't know for sure until after the surgery if the right side also has DCIS or something else.

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