DCIS Confusion

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lioness1111
lioness1111 Member Posts: 19
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Since November 7th I have been twisting in the wind of biopsy results.   Grade 3 DCIS poorly differentiated with necrosis and ER/PR negative.

I've been avidly and voraciously reading all of your posts in the DCIS forum, and am ever so grateful for everything that I have learned.  

I had a lumpectomy on Monday, December 5th.   I understand the wire loc and dye identified a larger area of concern than seen on prior mammos.   So, more tissue was taken out than originally anticipated.   I feel the surgeon did a wonderful job, and the incision is healing nicely.

Today I found the excised tissue had no cancerous cells.   On one hand I am thrilled and relieved, but on another level it doesn't make logical sense to me.  I know I should feel ecstatic, but am having a hard time understanding so I am conflicted and confused.  I am wondering about the accuracy of the original biopsy and/or the wire loc.  Has anyone else experienced a situation like this?

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  • jkp
    jkp Member Posts: 64
    edited December 2011

    Lioness - I am so sorry to hear there about the confusion with your results.  My excisional biopsy will be on Monday and I have been terrified thinking that something like you described will happen.  I am less scared of an enermy that has been identified and I can fight than I am of something that may be hiding.  I am very interested to hear from anyone who may be able to shed some light on this for us!

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  • Emaline
    Emaline Member Posts: 492
    edited December 2011

    If I understand your post correctly, you had an biopsy in November which yielded grade 3 DCIS, and I'm assuming not clean margins?  So then you had a lumpectomy on Dec 5 and they took out a larger area then anticipated but in the end yielded no further cancer?

    I went right from mammogram to excisional biopsy, which is basically a lumpectomy. Mine was wired guided.  The only suprise I had was that they decided to check out two different areas. I was aware of the one area of concern but not the 2nd one.  But they located both of them on the mammogram, inserted the wires.  When my surgeon came in, I asked why they were now doing two areas instead of one.  She basically stated one area was BIRAD 4, and the other area was BIRAD 3. Meaning one was highly suspicious and the other area was somewhat suspicious.  She said they decided to biopsy both areas as if one area came out to be cancer, hopefully they get it all when in the biopsy.  However if both came out to be cancer, then they would have to recommend probably further treatment.  In my case, the BIRAD 4 area was cancer and the 2nd area was fine, however they did not get clean margins so back in for the MX due to size and multi-focal.  

    So I guess to me, it sounds like your doctor probably got it all in the biopsy, which does happen...my surgeon was hoping to do this for me.  However they may have noted another area of concern, like mine above, which turned out to be fine.

     Unless I completely misread your post, and if I did...sorry!  

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  • cycle-path
    cycle-path Member Posts: 1,502
    edited December 2011

    I think Emaline's probably right -- the biopsy got it all. How big the the pathology on the biopsy say the tumor was? What was the size of it as estimated on the mammo?

    What did the pathology report of the lumpectomy say? Is there mention of atypical ductal hyperplasia?

    Has the doctor told you anything like, "apparently all the DCIS was removed during the biopsy?" 

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  • lioness1111
    lioness1111 Member Posts: 19
    edited December 2011

    Emaline and Jkp,

    I appreciate your answers. The complexity of all this is overwhelming, especially when tests are inconclusive.  Sharing of information helps sort it out, and I believe support is the biggest bright spot in the BC experience.

    BTW I just finished reading a book From Zero to Mastectomy,  What I Learned and What You Need to Know About Stage Zero Breast Cancer by Jackie Fox.   This tells the story of DCIS with humor and sensitivity. 

    The surgeon did say that maybe they got it all in the biopsy (if so it must have been pretty small). I want to go back to the biopsy report and get more details.  In any case, I will probably be getting rads in January.  Thanks to info on this site, I understand the different options for this. 

    Health and healing to us all,

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  • HantaYo
    HantaYo Member Posts: 280
    edited December 2011

    Namaste!

    Lioness, I am so sorry you are having to go through this.  It is not at all unusual for all of the cancer to be remved with the BX, however they still need to do the excision or mx because you need to get safe margins and also one can not be sure of this until a larger area is removed.  I had DCIS in three areas.  At BX one area was thought it possibly had an invasive component.  When I had my BMX  it was found that one of the areas of cancer had been completely removed (but still needed a safe margin), and there was no invasion in any of the 3.  Incidentally, the prophylactic breast had areas of ADH that had not been identified by exam, mammogram or ultrasound.  Just a time bomb waiting to go off sometime in my future.

    Karla

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  • stac
    stac Member Posts: 111
    edited December 2011

    I have heard of all or nearly all the DCIS being removed in the needle biopsy before (my BS even mentioned this prior to my surgery - that it happens sometimes).  If I understand you clearly this is absolutely fantastic!  Verify with your BS and CELEBRATE!  I was actually hoping that would happen to me.  However, the opposite happened. Prior to the lumpectomy only a 1 cm area looked suspicious. Yet the BS removed 4.5 cm and I don't have clear margins, so its looking like I have to go back in for surgery and have to reevaluate everything.  At first I was looking for the most conservative approach and the possibility of very targeted radiation and now my fears are this is much much bigger than I ever anticipated and certainly my strategy for facing this is changing with the increasing realization of how big this is.  I have small breasts to boot; so I am actually surprised I have a breast left, but I do right now anyway.  I have my post op visit today to look at where to go next.  I am so glad for you.  Keep us posted we need good news to CELEBRATE!

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  • lioness1111
    lioness1111 Member Posts: 19
    edited December 2011

    Cycle path, Hanta Yo, and Stac,

    I appreciate the wisdom of your experiences and the good advice to be thankful for my report.  

    I confirmed with the BS that the biopsy got it all. Hooray!!!!  She was more aggressive in doing the lumpectomy because, during the wire loc, the radiologist went after all microcalcifications. My BS likes to err on the side of removing healthy tissue, rather than leaving something bad behind.  I think the radiologist and surgeon did an awesome job.   

    I am hoping someday the mammos will do a better job of differentiating between calcs and cancer.   She said that is why some women with my identical diagnosis opt for MX or BMX.    

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  • jkp
    jkp Member Posts: 64
    edited December 2011

    Lioness - so glad to hear that they got it all!  I have to apologize for my prior comments, if they sounded odd.  I am just a mess right now and I think I imposed some of my fears onto your situation and I don't think they were even the same.  Congratulations on your excellent news!!!

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  • stac
    stac Member Posts: 111
    edited December 2011

    lioness1111,

    Thanks for letting us know. That truly is something to be thankful for and CELEBRATE!!!!!!!!!!!!!!!!!!!!!!!! I am celebrating with you from afar!

    jkp, I think part of going through this is being in a mess at times and facing so many unknowns.  We are courageous women to be pressing ahead to get a clear diagnosis and proactive treatment despite our fears.

    Blessings to you all as you take each next step!  

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  • Emaline
    Emaline Member Posts: 492
    edited December 2011

    Congratulations!  That is great news :)  Heal quickly and well!

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  • lioness1111
    lioness1111 Member Posts: 19
    edited December 2011

    jkp,

    I appreciate all your comments .  No apology necessary.  It is hard to make sense of this stuff, and I think we need to honor ourselves for having the courage to communicate rather than assuming the fetal position.  I agree with stac that we are courageous women to be pressing ahead to get a clear diagnosis and proactive treatment despite our fears. 

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  • lioness1111
    lioness1111 Member Posts: 19
    edited December 2011

    stac,

    My thoughts and blessings are with you as you receive your report.  

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  • Jelson
    Jelson Member Posts: 1,535
    edited December 2011

    lioness1111,

    might you be able to benefit by the recently reported research re: oncotype test for DCIS? and potentially avoid radiation?

    here is the summary from bco:

    http://www.breastcancer.org/symptoms/testing/new_research/20111207.jsp

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  • lioness1111
    lioness1111 Member Posts: 19
    edited December 2011

    Jelson,

    This seems to be a real breakthrough for DCIS, but I think all the Oncotype tests are for ER/PR positive.  

    Very exciting, though.  

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