Have I made the wrong decision? I ask myself everyday!

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luamar
luamar Member Posts: 7
edited June 2014 in Living Without Reconstruction After a Mastectomy

I was diagnosed with ILC in 2009. I had double mastectomy and now I am still trying reconstruction. I had 4 attempts but all went wrong and without a fully explanation, I was sent home. I made a complaint and I am still waiting to hear from them. My story was broadcasted by the local BBC News. They want to make my story National News, if I find more women in the same situation. If you are not happy and want to support me, please see the video/share it   www.youtube.com/watch?v=4wMbkq...  and contact me. Thank you.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2013

    I am not surprised you have complained you poor thing.....have you had a private appointment with a specialist reconstructive surgeon for his/ her opinion on your situation now?



    Its a minefield this isn't it?

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  • crystalphm
    crystalphm Member Posts: 1,138
    edited May 2013

    Luamar, I am so sorry to hear of your experience. I would highly suggest you post in the reconstruction area of these discussion boards to see what is going on with others.

    Most of us here have not had reconstruction so we don't know much about it.

    I do have 3 friends who had reconstruction and I can honestly say 3 to 5 years later, the results are not acceptable, I actually don't know of any reconstruction that looks good at the moment. My one poor friend is wearing her one boob up near her shoulder because she does not have the money (the 20% insurance won't pay) to get it fixed.

    I truly hope you get satisfaction and help....but in the meantime, please remember you did not choose this....cancer choose this, and you really ARE beautiful. You really are.

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  • Shocked_again
    Shocked_again Member Posts: 13
    edited June 2013

    I am considering this, as my choices are between mastectomy and lumpectomy with radiation. I have DCIS in both, with a questionable area in the right.

    None of the treatments offered are reasonable, all are extreme, traumatic, and in my opinion, barbaric. I don't know what to do. I like my breasts. They are nice. And I feel fine, I run, bike, am in good shape. I'm "healthy", or so I thought.

    The more I read, the less I feel hopeful that I will be able to feel. Normal again. Now I'm hearing that implants are problematic. And I hate the idea anyway. I don't understand how women voluntarily get breast implants to make them bigger, I nev understood that. And ironically, here I am, one who loves my beasts the way they are, and now I have to remove them.

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  • bluepearl
    bluepearl Member Posts: 961
    edited June 2013

    Shocked-Again: This is one of the traumas of breast cancer. If there were happy choices, we'd all make them but maybe there can be lessons drawn from this experience too. I value ME over my breasts, no matter what society has told us. No matter what decision you make, you WILL have a new normal and that NEW normal isn't so bad. I run with any good news I get. I have a friend who is in last stage of stage 4 and believe me, she would throw the remaining breast in the dumpster if it allowed her to live. IF you do decide on mastectomy the autlogous fat transfer makes lovely replicas of breasts and can even restore feeling. I haven't gone this way myself. I chose, so far, NO reconstruction. I don't understand voluntary implants either because we ALL have imperfections and should learn to see them apart from our internal strengths and beauty, and perhaps even PART of our own unique beauty instead of buying into the airbrushed unrealities advertising has made us buy into. Lots of women felt "fine" until they got some aches and pains and found out they had metastatic disease. Looks like you have early stage and curable. RUN with THAT!!! PLEASE.

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  • Shocked_again
    Shocked_again Member Posts: 13
    edited June 2013

    Thanks blue pearl. I am going to talk to more doctors, and take more time to decide. I felt like I was being led down a "default" path, but I have stopped that train. They did an MRI which showed more suspicion, and want to do more poking and prodding. I have decided no more poking, nor more tests, we know there are bad cells in there, they need to come out. All of them. So now it is down to which team. I have to meet with them and figure out what works best for me. And it is so fearful not knowing all the steps.But I have to learn and chose each step before taking it. I keep hearing " one step at a time" but surely I need to know what the steps will be, and where the heck they will lead me, or I won't go! Maybe there are aome steps that will show up unexpectedly... Anyway, I'm on the roller coaster, I know none of us want to be on. I thought I paid some dues for a while with my parents deaths last year, thought maybe I would have some time for peace, solice. But no, I am challenged again, for some reason. And I have no choice but to take the challenge. I have a child and a husband. I am so afraid to evn tell my child, so far she doesn't know. We wanted to have a plan first. By now it seems that will take us longer than we anticipated, so we are going to tell her soon. My poor baby. She's been through so much. I hate this.

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