DCIS -double mastectomy -recurrence

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GreenMonkey
GreenMonkey Member Posts: 666
edited June 2015 in DCIS (Ductal Carcinoma In Situ)

still in shock - curious if there's anyone out there who had DCIS - treated it with a double Mastectomy and then had a recurrence.

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  • ballet12
    ballet12 Member Posts: 981
    edited June 2015

    Hi Green Monkey,  there have been a few individuals with this situation.  Go through the DCIS posts.  I am so sorry to hear of this.  You have been through too much.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited June 2015

    Damn girl - you need to catch a break!  Here is an older thread re: DCIS recurrence that may have some info.

    https://community.breastcancer.org/forum/106/topic/734072


     

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  • 2timer
    2timer Member Posts: 590
    edited June 2015

    I'm sorry this has happened. I didn't have a mastectomy but I did have DCIS that recurred and I had done everything but a mastectomy:lumpectomy, rads, tamoxifen and it still came back. Mastectomy doesn't remove ALL of the breast tissue, just most of it.

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

    GreenMonkey, sorry to hear such unwelcome news! Maybe you could also post or read through the Forum: Just Diagnosed With a Recurrence or Metastasis. Hope this helps!

    Hugs,

    The Mods

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  • luckylegs64
    luckylegs64 Member Posts: 47
    edited June 2015

    Hi Green Monkey,

    I'm sorry, but we seem to be in the same boat! I had DCIS f/b double mx and reconstruction in 2011. Oncologist did not recommend any further treatment. I just recurred - got the news yesterday. Glad you were being diligent and found it. did you takeany hormonsl treatment?

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  • lifegoeson
    lifegoeson Member Posts: 189
    edited June 2015

    Green Monkey - I may be in the same situation but I don't know yet. I came here to post about it and saw your post.

    I had DCIS with bilateral mastectomy in 2009 and have been having breast MRI every 2 years to check the implants and to check any remaining breast tissue. Today I got a letter in the mail from the MRI facility that says this: "Your MRI indicates an abnormality that requires further evaluation. The UMass Radiololgy Department recommends a biopsy." It is Saturday so I have to wait until Monday to call my breast surgeon and I'm trying to remain calm but to me, that says there is a recurrence. Trying not to panic.

    What did they tell you about your recurrence? What's the next step? Is it DCIS again? What the heck do they do for a recurrence post-mastectomy?

    Hang in there and keep us posted.

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  • jill47
    jill47 Member Posts: 351
    edited June 2015

    Greenmonkey - I'll second SpecialK's "damn girl" and I'm deeply saddened for you after just going through another cancer and treatment, are you even done with treatment? Here is another tread started by Rosemomma88; if you bring up her bio, she has an amazing blog. How did you find the recurrence? I'm so sorry. Hugs, Jill

    https://community.breastcancer.org/forum/106/topic...


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  • LAstar
    LAstar Member Posts: 1,574
    edited June 2015

    GreenMonkey -- I am so sorry to hear this -- sending a hug your way. What is your treatment looking like?

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  • MizMimi
    MizMimi Member Posts: 98
    edited June 2015

    I'm so sorry that you are having a recurrence. I am a month out from surgery and I too am choosing a DBMX to lower my chances of recurrence.

    Reading about your situation, I am curious for more details. What is the plan now?

    This makes me very concerned about recurrence. I really have been focusing on the surgery details of my plan and had not really spent much time thinking that it could very well return, even with this plan.

    Did you have any other treatment besides a surgical approach?

    I understand if you don't feel like messaging right now. Take the time you need to take of yourself. I will keep you in my thoughts and send you good wishes!

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  • luckylegs64
    luckylegs64 Member Posts: 47
    edited June 2015

    MizMimi, best of everything to you in you upcoming surgery. My surgery was similar to yours and it went smoothly with no complications. Recurrences are the exception - but they do happen! And of course, you will read about them here!! I believe I had a false sense of security after my BMX. I was 46 at the time and no hormonal treatment was recommended for me and I got on with life, but I was the 2% to have it come back. My encouragement to you is that you continue to be diligent with self exams, don't forget the axillary region. I found both of my recurrences myself, they were on what I would consider the edges of my tissue (axillary and sternum). Imaging is tricky with BMX and recon I think. I'd like to encourage you, that you are doing the right thing by lowering your odds for recurrence for sure!! Check out the integrative/complimentary medicine forums for healthy lifestyle changes if you haven't already! Bless you and let us know how everything goes!

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  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited June 2015

    ladies,

    I'm am sorry you are all going through this again! I had DCIS diagnosed in October 2013, had bmx January 2014. I had reconstruction and my most recent procedure was in March 2015- fat grafting. Well last month I felt a grape sized lump so I called my bs. She said u had bmx and ur cancer was never invasive to start, you're paranoid, you're fine. I insisted they check it out. It was nothing.. Couldn't find anything on ultrasound. Well last week I found another lump. I called the dr back. The receptionist says well if u had bmx u wouldn't have breast tissue... Would u? I said well they take as much as they can, some may be left behind, I want to see the dr. So she put me in for this Monday with the pa. I know she's going to be like stop calling us!! They've already told me there is NO way I can get cancer again! I was like I wish that we're true but theres always a chance! I have read posts here about women who have been diagnosed with dcis and had bmx and had recurrences. If I feel something I want I checked- point blank! Call me paranoid, roll your eyes! I have 4 kids who need me; a 13, 10, 8 and 5 year olds. How stupid would I be to feel something and not look into i

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  • april485
    april485 Member Posts: 3,257
    edited June 2015

    Mommyathome, please make sure they listen to you no matter what. For a doctor's office to say that since you had a mastectomy you can't recur is absolutely not true! I cannot believe they would say that and not take ANY concern about a lump seriously. Where in CT are you? My doctors always take my concerns/questions seriously and all of my doctors are at Yale which is the only NCI designated cancer center in CT. So, if they don't listen, get a new doctor! You always have options. Best to you!

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  • Jshoemake01
    Jshoemake01 Member Posts: 5
    edited June 2015

    I am four weeks out and my doctor kinda indicated that I would not have reoccurrence as I had bilateral mastectomy and it was not invasive. However I keep hearing it can happen. We know our bodies and if I suspect anything I would demand to be seen. How do they check you after mastectomy for reoccurrence?

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