DCIS-stage 0-mastectomy suggested after 3 lumpectomies

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CJKLOSE
CJKLOSE Member Posts: 24
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hi. I just received a call from my surgeon that my 3rd surgery came back full of DCIS. The reason for the 2nd and 3rd surgeries was due to lack of good margins. She doesn't want to do a 4th surgery because she thinks this is wider spread than initially thought. She met with my oncologist and radiologist and they too are suggesting mastectomy now. Another contributing factor is that I am hormone negative and not a candidate for treatments like tamoxifen. I am waiting for results of my HER2 results.



Am in the need of some friendly consult. They are suggesting mastectomy of the left breast. No DCIS in right breast. I have very dense breasts and many cysts and complex cysts in the right breast. Not sure there's any connection of DCIS and complex cysts, but I had several aspirations of the left breast that is now DCIS. I wonder if I should go for a double mastectomy for that reason, along with not getting the benefits of using tamoxifen.



Does radiation typically follow the mastectomy(ies)? I ask this because I know once I do radiation and if cancer showed up again in that area, it would no longer be an option for me.



Is chemo used in cases like mine?



And last, I see Dr. Lagios mentioned throughout this board. Is this someone that's available to anyone for their thoughts? If, so, how do I go about doing this.



This board has been a blessing to me...thanks to everyone for sharing.

CJ

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  • GrammyR
    GrammyR Member Posts: 702
    edited September 2013

    Wow CJ what a horrible decision to have to make. I had (have ) the hormonal type and was 58 at the time of my mastectomy .I had a 2cm lump which had previously been noted as fibrous tissue. Lymph node biopsy and dissection at the time of surgery. I would for sure do the left mastectomy. Others will have better info on if to do both sides. I had cysts drained on other side that have been neg. So for now will keep one side. Mastectomy surgery is not a breeze as the surgeons like to tell us. Having both done at the same time will be twice the soreness of recovery. Will be limited to sleeping on your back. Driving may be a longer wait. For sure get PT after regardless. Hugs to you and I am praying fot a smooth recovery.

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  • CJKLOSE
    CJKLOSE Member Posts: 24
    edited September 2013

    Hi GrammyR. Thanks so much for sharing. I too am 58 (for another 3 months...haha). You definitely gave me some important things to consider, recovery. How long was it until you could drive? Did you have radiation and/or chemo after surgery? Did you do reconstruction during the mastectomy surgery?



    Thx again...God bless sisters like you.

    CJ

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  • Beesie
    Beesie Member Posts: 12,240
    edited September 2013

    CJ, DCIS sometimes can be very widespread and that's why a mastectomy may be necessary.  But if it's all DCIS, then it's still Stage O, and that's the good news.  DCIS is a pre-invasive cancer, so it can't travel beyond the breast. This means that systemic treatments like chemo aren't necessary.

    Rads usually isn't required after a mastectomy for DCIS, but sometimes, if the surgical margins are very close, rads will be recommended even after a mastectomy.  In a situation like yours, there is probably no way to know until you have the surgery.

    As for the connection with having had cysts, I had lots of cysts too - and more aspirations than I can remember.  But that's actually not uncommon. About 60% of women have fibrocystic breasts and most often, it's not in any way connected to breast cancer.  They are just two separate conditions and you (and I) happen to have both.

    I was diagnosed 8 years ago and have been hanging out here since there.  I've learned a few things, and here is some info that I put together about DCIS.  It might be helpful as a starting point:   A layperson's guide to DCIS

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  • Beesie
    Beesie Member Posts: 12,240
    edited September 2013

    A couple of additional pieces of information.  First, HER2 status doesn't matter for DCIS.  At this point there is no understanding of what it means to have DCIS that is HER2+ vs. HER2- and there is no difference in the treatment.

    As for the decision on a single mastectomy vs. a bilateral mastectomy, take a look at my June 13th post in the following thread.  You might find it helpful as you weigh the pros and cons of each option:  Topic: lumpectomy vs mastectomy - why did you choose your route?

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  • CJKLOSE
    CJKLOSE Member Posts: 24
    edited September 2013

    Hi Beesie. Thank you so much for all the great info you provided me. My plan is to carefully and thoroughly read the references you included. I've skimmed through it, but really need to sit in a quiet place, uninterrupted, to grasp it so I know what to ask my physicians and what is important for me to consider...especially since you have been there and still coping with some aspects. So with that, I am sure you will hear back from me with more questions and seeking more consult. Thx again and have a great day!!!

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  • CJKLOSE
    CJKLOSE Member Posts: 24
    edited September 2013

    Beesie..thx again for all that good information.  I will be meeting with my surgeon tomorrow about the mastectomy and have lots of questions for her.  I've been looking at reconstruction options as well.  The DIEP really has my interest, although it says many surgeons won't perform on active smokers.  Well, I was an active smoker for a long time and just recently started Chantix when I was diagnosed with the breast cancer.  I'm down to one cig a day...I do like a puff or two and that holds me for hours.  Do you know much about DIEP?  Do you know if I've screwed up my chance at the DIEP that it'll be a no go and I should just start looking at other options?  Thanks again, CJ

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  • Beesie
    Beesie Member Posts: 12,240
    edited September 2013

    CJ, I'm afraid I can't answer that question.  You might want to post it in the Reconstruction Forum - lots of women on the board have had DIEPS so hopefully someone will have an answer.

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  • CJKLOSE
    CJKLOSE Member Posts: 24
    edited September 2013

    Thank you...will do

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited September 2013

    CJKLOSE

    I did get a second opinion from Dr. Lagious.  My diagnosis and path is listed here.

    My situation is quite different from yours.  One of the criteria is that the DCIS be smaller than one centimeter.  I don't know what Dr. Lagious would say about your situation.  I have heard that he is retiring.  I would still suggest you appeal to him for guidance.

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  • LAstar
    LAstar Member Posts: 1,574
    edited September 2013

    Cjklose, I had a similar situation and had flap reconstruction (SGAP). My surgeons require their patients to refrain from smoking for 6 weeks (if I'm remembering that number correctly) to be sure that there are no problems with blood flow to the new flap so it survives.



    I had two lumpectomies and an MRI indicated that the DCIS was very widespread. One if the margins that came back clear after the first surgery had more DCIS behind it. the MRI also indicated some suspicious spots in the other breast that turned out to be nothing after my BMX. I fortunately had no problems with the reconstruction on my non-cancer side, but I do have scar tissue necrosis in the left side and will have to have more surgery to correct this. My surgeons tend to have this happen about 1% of the time. I was not prescribed radiation or tamoxifen since my risk is now so low.

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