Phantom Pain

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Merianneb1
Merianneb1 Member Posts: 8
edited June 2020 in Living Without Reconstruction After a Mastectomy

I am a little over two months post bilateral mastectomy without reconstruction and have started to experience what I assume is phantom pain, especially on the side where the breast cancer was. I am curious if anyone else has experienced it. I had DCIS and Padgets on my left side and before surgery at times the Padgets would get painful and now I am finding I am experiencing that same pain again although when I look down I realize there is nothing there.

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  • ksusan
    ksusan Member Posts: 4,505
    edited May 2018

    It's likely the nerves reattaching. Pretty common. Try lightly massaging the area.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited May 2018

    I am 6.5 years out from UMX, and I still have phantom pain and phantom itch quite frequently.

    All these years later, it is still weird to me when it happens - especially the itching nipple that has

    been gone for so long! The only thing that seems to help the pain and or itch is to gently pat

    my non-existing breast area and scar.

    GOOD LUCK!

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  • Aussie-Cat
    Aussie-Cat Member Posts: 5,168
    edited October 2018

    One thing that can help phantom pain is to massage the area while looking in a mirror, which gives the brain clearer signals that there's no longer anything there. I hope that helps.

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  • MexicoHeather
    MexicoHeather Member Posts: 365
    edited October 2018

    I read it, then got itchy ghost nipple. Is that like watching somebody yawn? Yep. It happens to me and I usually go get moisturizer.

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  • sherrmue
    sherrmue Member Posts: 25
    edited October 2018

    8 years out from bilateral masts I still have the occasional phantom pain. They were daily and frequent at first and gradually lessened as the nerves healed and regenerated. I have sensation over my chest now and right axilla which I did not have at first.

    Surprisingly, I continue to experience phantom breasts. Maybe more now than in past years when I had less sensation.It sometimes feels like they are still there, including as some have noted, the “itchy nipple”.

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  • mnsotamom74
    mnsotamom74 Member Posts: 126
    edited February 2019

    I’m 3 months post double mastectomy and I swear I feel tenderness across my chest close to when I’m getting my period. I always had sore breasts several days before I’d get my period and I’m still having that feeling, it’s definitely weird

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  • Kake
    Kake Member Posts: 6
    edited February 2019

    So weird! I am so frustrated by the breast pain (phantom). There is no stopping it and I don't think "pain" meds would do anything as it isn't truly "painful". It is just always in my face though. Tingling and itching and like little shocks of electricity. If my breast was still there I would swear it was in the nipple area. So many times I've reached down to give it a tweak or itch it.. haha.. but nothing there anymore! I did have pain in the breast before the mastectomy - probably the tumors growing - I had 4 in the left breast. I am a month out from double mastectomy. Massaging the area doesn't really help as it is still mostly numb plus it causes me to feel anxiety when I have too much sensation on the skin. Oh the bloody nerve of my nerves!!!

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  • Earth_Sky
    Earth_Sky Member Posts: 40
    edited June 2020

    I had my total double mastectomy April 2020 and started getting phantom pain right away. Thought it would go away but still get it mostly at night. What was weird for me a few days ago was I kept seeing my breast in the mirror for a brief moment. It scared me. I then got very sad & put on my fake divas as I call them & did not look in mirror for several days. I am better but it was weird for a few days for me. I just assume I will forever have the phantom pain & usually wrap a soft blanket around my shoulders & focus on to something else. At night I keep a very soft blanket throw near my pillow just in case I get the sharp pains & place it on my chest. What a journey we walk. I will continue to keep a stiff upper lip through it all.

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