Just Diagnoised & Confused

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Brenda46
Brenda46 Member Posts: 7
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I had an issue with clear leakage from my left breast in Jan. 2010. Had a ductogram and found a few pallops so a section of the duct was removed Dec. 2010 as a precaution.  Immediately after a small fluid cyst formed in my left breast.  I recently had the cyst removed in 2/2012.  The path result states extensive DCIS in the cyst wall, Stage 0, Grade 1 without necrosis, cribriform type.  The specifman was 5.8 x 4.0 cm focally opened cyst walk like structure.  Sectioned & entirely submitted.  12/Frags.  The cyst was the size of a walnut.  No Invasive found.

After meeting with a med. radiologist, med. oncologist & suregeon they all formed the recommendation for mastextomy with no rads.  A 2nd choice was attempt to get clear margin with rads. but they think they are unlikely to get clear margin.   This seems so extreme to me for such a low grade.  I had an MRI less than 2 weeks after the surgery and the only findings were from the cyst removed section and no other signs in the left breast.  Additional DCIS at the removal site was unclear due to recent surgery.   Now I read about over treating DCIS & wonder if mastexomy or radiation is really needed.

 Has anyone had a similar issue or diagnoisis?  Is mastexomy warranted without additional MRI's after healing or at least an attempt to obtain clear margin?  I'm also condsidering attempting lumpextomy & if clear marign, no rads. 

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited April 2012

    I had a lumpectomy  in November 2011. They found DCIS, grade 1, no comedo necrosis present, and dirty margins. The surgeon drew a picture of my breast and milk ducts on her white board. It was riddled with pre-cancer and DCIS. As soon as she gave me the choice of lump + rads or mastectomy, I knew a mastectomy was best for me. I took the night to think and talk about it with my SO, and called the surgeon the next day with my decisionn for a mastectomy. I was given a presurgical MRI of both breasts and I had said that if they even suspected anything in the other breast, I would skip the biopsy, lumpectomy and just get a bilateral mastectomy. The other breast MRI showed a spot (after the biopsy it was PASH, a benign tumor, whose only treatment is surgery anyway).  Afterwards, I knew that I made the right choice. It just seemed like, in my mind, that my breast was a breeding ground based on that picture drawn on that white board. And I am not sure I could live with a lump + rads and having to go back for mammograms, rechecks, etc. The stress of that would be worse for me than losing my breasts. But for some, it's the opposite. I think I had to make my decision based on the information given to me by my docotors because I had not found breast cancer boards until later.

    I wish you the best with such a horribly difficult decision.

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  • Beesie
    Beesie Member Posts: 12,240
    edited April 2012

    Why are your doctors concerned that a re-excision won't result in clear margins?  If the MRI had been "full of stuff", as mine was, then that is a logical conclusion.  But if your MRI seemed to be clear except possibly in the immediate area of the cyst removal, I don't know why your doctors seem so sure that surgery won't yield clear margins.  It sounds to me as though your DCIS might have been confined to the walls of the cyst - in which case there might not be much, if any, DCIS present at all.

    If you are uncomfortable with the idea of having a mastectomy and if you are willing to try the re-excision, understanding that it might not be successful, then I don't see any reason why you could not proceed that way. It seems like a reasonable option.  If the re-excision is successful and if in fact there is no more or only a little more DCIS found, then the re-excision might result in very wide margins.  With wide margins, with DCIS that was in an isolated area (the cyst) and with grade 1 DCIS, at that point you might be in a position where even the need for rads is questionable - or at least worthy of a 2nd opinion (try Dr. Lagios - lots of women here have gone to him about this).

    Of course, the re-excision might not work and then you might have to have the mastectomy. But if you are concerned that a MX may be over-treatment, it might be easier to handle it in two steps, moving to the MX only at a point where you know for sure that it is necessary.  I had no choice but to have a MX - it's not something I would have chosen if my MRI had not clearly shown that a re-excision wouldn't work (I had two large areas of DCIS and dirty margins all around after my excisional biopsy). If my MRI had not been so definitive, I would certainly have attempted a re-excision before agreeing to a MX.  I wouldn't have like the idea of having an extra surgery but I would have preferred that to losing my breast unnecessarily.  

    Good luck with your decision. 

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  • eine
    eine Member Posts: 67
    edited April 2012

    Hi Brenda.  I am sorry you are here but happy for you that you found this forum before making your decision. I had a lumpectomy in 2008 with clear margins and radiation. I attempted reconstruction since I was so small to begin with and the surgery and rads basically brought me to nothing. I don't regret my decision at the time based on my recommendation from my surgeon, but I wish i was aware of the long term damage radiation does to the skin that made implants impossible. My only other recommendation would be to get a second opinion and, if you are thinking about any kind of reconstruction, also consult with a plastic surgeon.  Good luck with your decision.

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  • Brenda46
    Brenda46 Member Posts: 7
    edited April 2012

    Thank you all for your stories and support.  It's nice to know I'm not in this alone.  :)   Just got my estrogen/progrestrone results.   Estrogen postive 3+ (96%) & progestron 3+ (93%) with DCIS, stage 1, grade 0 (5cm). I had been on bc pills but immediately stopped.  My surgeon recommended mx with no radiation.  They did not have the hormone results at the time.   Now I'm wondering if I could get by with a lumpectomy with no rads and taking tax.   Does removing the additional estrogen & taking a blocker prevent the growth or additional growth since my hormon results are so high????  Going to get a 2nd opinion from another surgeon next week.  (yea!)

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