2 lumpectomies, expecting radiation... now mastectomy!

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Kimmy_nl
Kimmy_nl Member Posts: 21
edited September 2018 in DCIS (Ductal Carcinoma In Situ)

Just wondering if anyone out there had a similar outcome?

I saw the rad onc yesterday, fully expecting a radiation treatment plan after having 2 lumpectomies on my left breast. But when I met with him he told me that because of how close the surgical margin was to my chest wall (0.9mm) that part of my heart and lung would be radiated. I would have scar tissue on my heart and lung and I would need more radiation than the 20 sessions normally prescribed. So he told me that he would recommend mastectomy and no rads.

My gut instinct from the beginning was mastectomy, but I was talked out of it by the BS. So after all this I have to go back in for mastectomy. I’m opting for immediate reconstruction at the time of my mastectomy. Now debating if I should have BMX and be totally done with this once and for all. Any thoughts? Anyone else on here opt for BMX for DCIS dx of one breast?

Comments

  • LisaK12
    LisaK12 Member Posts: 107
    edited June 2018

    Yes and am very glad I did, because the non-DCIS breast ended up having Atypical Ductal Hyperplasia, Lobular Carcinoma in Situ, and an intraductal papilloma -- all of which indicate a higher likelihood that I would have developed cancer in that breast anyway. None of those had shown up previously on mammogram, ultrasound, or MRI.

    I had immediate reconstruction, direct-to-implant (no tissue expanders), with smooth round silicone implants placed above the muscle. The recovery was not bad at all and 10 weeks out I am pleased with the results. While I miss my real breasts, I am thrilled to be cancer-free and to not need radiation, chemo, or any other treatment. And no more mammograms, ever! Just an MRI years from now.

    Eventually I plan to get 3-D nipple tattoos once my scars heal more.

    Good luck with whatever you decide.

  • Kimmy_nl
    Kimmy_nl Member Posts: 21
    edited June 2018

    Hi LisaK12,

    Thanks for the response! How long did your surgery take in OR

  • Justkeepmoving
    Justkeepmoving Member Posts: 106
    edited June 2018

    yes -- me.

    I'm lying here in my hospital bed after bilateral mastectomy and DIEP flap reconstruction (yesterday).

    I had DCIS in my left breast and it was high grade and I felt pain and uncomfortable from it. And i felt the tumor up against the nipple so I knew I was losing it. I had doubts (swatting a fly with a hammer) but I had 2 other spots in the same breast and im small size (barely a B cup). And since I wanted DIEP and it's a one shot deal I did them both.

    I wonder if some people are steered toward lumpectomy Bc of the cost.

    I hope you find the treatment that is best for you!

    And Newfi Nl are you from new foundland? My grandparents came from there :

  • Kimmy_nl
    Kimmy_nl Member Posts: 21
    edited June 2018

    Hi Justkeepmoving,

    I hope you have a speedy recovery! Yes I’m from Newfoundland:). I’m not entirely sure what reconstruction options are available here. There are only 2 plastic surgeons here that do breast reconstruction surgery. I will probably go with whatever’s option get started me back on feet faster and has the least OR time. I just want this done and put behind me. I know a lady that had a UMX and the PS had to do work on her good breast to match it better cosmetically. Bc of the scar tissue she is now plagued with biopsies in her good breast

  • Lula73
    Lula73 Member Posts: 1,824
    edited June 2018

    Newfie-it’s not uncommon to do BMX just for symmetry vs uni. There could also be something going on in the other breast as some other ladies have pointed out or something could pop up in the other breast later if you leave it. I started out with calcifications then DCIS then idc and opted for BMX and like justkeepmoving I did immediate DIEP. Everyone wants the treatment plan that’s least disruptive to their lives, however sometimes the least disruptive can end up being quite disruptive, uncomfortable or even not pleasing (the way implants look for recon is not the same as how they look for augmentation) when we look at the long term. Definitely look into the different types of recon and go with the one that will give you the overall outcome you want. DIEP or natural tissue recon that does not use implants or muscle gives you the most natural looking and feeling recon breasts. Also, travel for reconis quite common as well. You dohave more options than just the 2 guys locally.

  • VegGal
    VegGal Member Posts: 507
    edited June 2018

    I did a BMX for a 6 mm spot of DCIS. No regrets. I would also encourage you to explore ALL options before proceeding. I went with "first available" with my initial exchange and was not 100 per cent comfortable. Sure enough, I hated the outcome and ended up with a redo 15 months later.  I wish I hadn't been in such a hurry. 

  • Kimmy_nl
    Kimmy_nl Member Posts: 21
    edited July 2018

    Hi Lulu

    Yes that is true, right now I'm thinking quickest and easiest option. But your right I should be looking at long term and the optimal results.

    Unfortunately I don't have the option to travel anywhere else unless I pay for it all myself. Where I live, unless you have another critical illness insurance policy, the only option available is to have your surgery done in your own province. I do think there is options though. I've been looking into what the local PS do here.

    VegGal my spot was 5mm of DCIS. But my mammograms were done at an earlier age for me because I was having issues with my right breast. The DCIS was discovered in my left breast when I had the mammogram done. I'm 44 years old and I don't want this hanging over my head

  • Col321
    Col321 Member Posts: 14
    edited July 2018

    I had BMX with immediate DIEP reconstruction last month after being diagnosed with DCIS on the left side only in April. They told me the DCIS was multifocal on the left side so at least a unilateral mastectomy was recommended. There were suspicious spots on the mri on the right side and I was told they would all need to be biopsied if I wanted unilateral. I did BMX for my peace of mind although the final pathology showed no cancer on the right side. I didn't want to always be waiting for the other shoe to drop. I only wanted to go through surgery once.

  • PNWBCHgirl
    PNWBCHgirl Member Posts: 115
    edited July 2018

    long story short for me is The only thing I would change in my decisions was I would have opted for bilateral Mastectomy when I needed my right breast removed because in Hind sight I ended up doing my left too. You can read my story in my profile. The breast surgeon and Plastic Surgeon offered and I chose unilateral . It would have saved me a few surgeries.

  • Kimmy_nl
    Kimmy_nl Member Posts: 21
    edited July 2018

    Thank you everyone for sharing! I have decided to have a BMX, and hopefully be done with this. I am waiting for my appointments with the BS and PS, but after chatting with my GP yesterday I am moving forward with bilateral MX and immediate reconstruction. Only thing is where I live they won't remove the healthy breast the same time as they remove the DCIS breast, so I will have to wait for the second surgery. But I'm ok with that, I just want this done.

  • Kernaz
    Kernaz Member Posts: 8
    edited July 2018

    same boat....also 44 and after 2 lumpectomies, still no clean margins. Can’t do radiation on that side now. I am trying to decide between unilateral or bilateral....the MRI just came back totally unremarkable on the healthy side, so the oncologist said it would be a philosophical choice more than a medical one

  • Kimmy_nl
    Kimmy_nl Member Posts: 21
    edited July 2018

    Hi Kernaz,

    Are you doing reconstruction? I haven't had my consult with the PS yet, but I think I would be a candidate for the direct to implants and I am hoping to be a candidate for the nipple sparring mx. When considering the bilateral vs the unilateral, I'm also thinking about symmetry as well as peace of mind. I would have to do implants bc I have already had a tummy tuck 10 years ago after the birth of my twins and I don't want anymore scars than necessary. I already look like Frankenstein! But where I live am looking at 2 different surgeries for removal of the healthy breast. In the time it takes to get the second surgery I might have my mind changed depending on how the first one goes. I wish I had of had the mx done the first surgery and not lumpectomy. Best of luck to you!

  • Kernaz
    Kernaz Member Posts: 8
    edited July 2018

    I have decided on no reconstruction, at least for now. I’m sick of dr appts and just want the fastest easiest path to being done as I can. Also decided just to do one side for now. I can always do the other side later, but it will be nice to have one good arm during recovery and one side with feeling. My DCIS is behind my nipple so I can’t do nipple sparing. Good luck to you too....this sucks

  • Kimmy_nl
    Kimmy_nl Member Posts: 21
    edited September 2018

    I decided on the one side as well. I agree I would like the use of 1 arm and feeling on one side during recovery. I met with the BS this morning and I am a candidate for the nipple/skin sparring direct to implants. I'm just looking forward to geting this done and put behind me :)

  • Gramto4
    Gramto4 Member Posts: 51
    edited September 2018

    kimmy_nl

    I was diagnosed with DCIS in my right breast in February 2018 . I got the opinion of three oncologist as to whether I should remove both breasts or just the right breast . They believed that I did not need to remove the left breast unless I was worried about symmetry and that I could have reconstructive surgery to obtain symmetry. I had a unilateral MX and after 3 months of fills in the tissue expanderI just had exchange surgery to remove my TIssue Expander and put in a silicone implant. I received fat grafting around the implant to gain fullness and contour. A reduction and lift was done on my left healthy breast . I’m four days out from surgery and am happy with the results. My PS says that I won’t see the full results for about 4 months. I’m going to have nipple reconstruction on the implanted breast in December and if by then my PS thinks we need to do anymore contouring around the implant breast he will do so them .

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