Bilateral Mastectomy, Post surgery pain, 8 weeks

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BAP10
BAP10 Member Posts: 10
edited May 2020 in Surgery - Before, During, and After

I had my surgery March 5, 2020 and I am 8 weeks post surgery. I had a bilateral mastectomy with expanders put in for reconstruction and I am still in pain. I am still on pain meds. It is so tight underneath my breasts all the way to underneath my arms that it’s hard to take a deep breath. It also feels like part of my breasts are under my arms and there is a lot of scar tissue under my arms. I just started PT & OT via Zoom because of COVID19. My range of motion of my arms is not great. I will get radiation starting June 1, 2020 and will not get reconstructive surgery until approximately March. 2021. My question is when will I feel normal and with no pain? Or will I feel this badly until I get the expanders out? Also will I get all my range of motion in my arms back?

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  • Rah2464
    Rah2464 Member Posts: 1,647
    edited May 2020

    Bap I cannot speak to the experience with expanders as I went direct to implant but I can tell you that I had a lot of cording and scar tissue develop as well as range of motion loss on my left side until I began the physical therapy/massage therapy process. Some of us just simply make more scar tissue than others. The therapy will definitely improve things and I would also highly suggest that when allowed you find an oncological massage therapist who understands the complexities of recovery from a mastectomy.

    I am truly sorry to hear about the difficulties you are experiencing. I hope the pain begins to alleviate soon. I seem to remember in my recovery that my pain ticked up weeks 4 and 5 post op, maybe because nerve endings were knitting together. It did lessen but the tightness for me stayed a while. PT, stretching, gentle yoga all helped me. My PT as well told me that we hold a lot of stress in our sternum and chest and I have really tried to focus on clearing that. My best to you, hope you will let us know how you are doing.




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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited May 2020

    I had expanders and they hurt the entire time. Things that might help - don't let them fill so fast and get them to remove some of the fill until you are comfortable. If you're not having exchange surgery for a year, there's no rush to stretch everything in such a hurry.

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  • BAP10
    BAP10 Member Posts: 10
    edited May 2020

    Thanks for your answer I appreciate it.

    I have not been filled up yet with saline, except a little, during surgery so its mostly the pain from just the expanders which as you know, will be in for a very long time because I have to get radiation first. How many months did you have the expanders in placeand did you do anything else to mitigate the pain? I find that as each week goes by I am unable to tolerate the pain, it’s wearing.


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  • BAP10
    BAP10 Member Posts: 10
    edited May 2020

    Thank you so much. I will seek out an oncological massage therapist. This pain is horrible. And while I am already doing soft yoga, PT and OT and it has helped tremendously with mobility, sadly it had not helped with the pain

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  • mac5
    mac5 Member Posts: 135
    edited May 2020

    Bap10

    I had a right MX and BiLat expanders On May 1. I will have Radiation Simulation on May 26 and a PET Scan with a CT Scan on May 27. I’m told I will have 33 Radiation Treatments over 6 weeks. I’ve opted to hold off on Reconstruction until after Radiation. But the implants hurt! My PS says it’s because of muscle spams because the implant is sewn into the muscle. The Valium they prescribed for muscle spasms really helped me

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  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited May 2020

    I had expanders placed right after BMX on Sept. 19. I had finalized breast reconstruction on Jan 2020. In my case, expanders and silicone implants hurt more than BMX. It is getting slightly better but one side where SN nodes were removed still hurts even with yoga. The arm and breast pain feels stronger when I move my arm up. I was told I don't need PE. Hopefully it will get better otherwise I will remove the implants and go flat.

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  • BAP10
    BAP10 Member Posts: 10
    edited May 2020

    Thanks for your response. The expanders are so tight and hurt so much that I am going to try a nerve block

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  • BAP10
    BAP10 Member Posts: 10
    edited May 2020

    Thanks and I hear you. My radiation will start 3 months post Bilateral Mastectomy/Expanders and by the time I finish radiation and wait time post radiation It will be a year before I can get the expanders out and have the implants put in. If I can’t handle the pain I will take out everything as well

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  • OnTarget
    OnTarget Member Posts: 447
    edited May 2020

    I had expanders for 6 months. I made peace with them around month 4 maybe?

    There is hope!! :)

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  • BAP10
    BAP10 Member Posts: 10
    edited May 2020

    Thank you for that information it gives me hope.

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