Risk of Post Prophylactic Mastectomy Pain

Charlierun
Charlierun Member Posts: 35
edited June 2021 in High Risk for Breast Cancer

Hi, I am days away from meeting with my plastic surgeon following my breast reduction 7 weeks ago, which I needed to do prior to a prophylactic nipple sparing bilateral mastectomy. After my extensive research on this forum and on the force forum, I have realized the one surgical complication that frightens me as much as a possibility of breast cancer (I'm BRCA2 + ) is chronic post mastectomy pain. Has anyone had experience with unrelenting pain years after a prophylactic bilateral mastectomy? I have not been able to find out how common of a complication this ispost mastectomy. I'm also not sure whether it's more common if you do a diep flap using your own tissue or you use implants? Also the fact that I am 66 , I wonder if that if age plays a factor in this ? I will be asking my plastic surgeon about this complication but I'd be really interested in hearing what others experiences have been and if this was a deterrent for some in undertaking a prophylactic mastectomy?

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2021

    Hi Charlie! You might find this thread informative: https://community.breastcancer.org/forum/136/topic...

    We hope this helps!

    --The Mods

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  • Charlierun
    Charlierun Member Posts: 35
    edited May 2021

    Hi, Thanks, Yes , these were the posts that I read originally that has really enlightened me to the risk of post mastectomy pain and some stats indicate the incidence is as high as 50% . Itseems the pain occurs even if it’s prophylactic and not always related to prior breast cancer treatment like radiation. Personally I find this quite terrifying as it’s hard to imagine having a prophylactic mastectomy and end up with unremitting serious pain. I’m hoping to find something current that addresses if there’s anyway the surgeon can prevent this during the surgical procedure of the mastectomy. I do commend the women at high risk like me (BRCA2+) who had the courage to undergo a prophylactic mastectomy with reconstruction. I worked in mental health for 40 years and patients who had chronic pain really struggled with depression and quality of life. I really am appreciative of this site because it has allowed me to be very fully informed of the risks before I decide once again whether I have what it takes to go ahead with a prophylactic mastectomy.

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  • LivinLife
    LivinLife Member Posts: 1,332
    edited May 2021

    Since being on this site - about 10 months now - I've generally seen folks do pretty well from the physical pain perspective. Many have not required prescription pain medication beyond the surgery/recovery or the few days after - not true for all for sure. I did not use any prescription pain medication after I left recovery - relied on Ibuprofen rotated with Tylenol for just over week though took less as those days went by.

    Issues that arise from any breast surgery can be lymphedema which is often painful esp. if nodes are removed - I cannot remember the stats on how often people are diagnosed with it though I do not believe it is a high though I believe the number varies greatly depending on the citation... I will leave that to someone else to cite though. I developed bilateral cording, persistent though often it is self-limiting or a lymphedema therapist can help resolve it. Mine has greatly reduced though I have scleroderma which is why I think it has been persistent - it's not painful now just annoying sometimes. It was initially quite uncomfortable with certain movements until treatment.

    What I hear the most people complain about is the tightness in the pec area and what I call the "wad of dollar bills" under the armpits. My lymphedema therapist was able to remedy that when I finally scheduled with her about 4 months after surgery. The pec tightness is still there though also better - still pretty tight though. I often don't notice it - become my "new normal" though it is always there. You can of course have nerve pain issues with any surgery and breast surgery is no different. You will definitely feel the nerves regenerating from some time after surgery - zaps, itching, etc. My zaps have subsided though I still get that itching - keeping the area moist and firm pressure helps - it's not constant... I notice mostly when relaxing in the evening.... These things (zaps, itching, etc.) can be long term/chronic. Mine is not to a great degree. I still have a lot of numbness too. I think I've gotten about all the feeling back that I will get back. Nerves can regenerate up to 2 years for the most part though most regeneration occurs in the first year. I've not regretted my bilateral for any of the above reasons - or any other reasons for that matter. Hopefully you will hear from others too.

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  • Rosemarysgranddaughter
    Rosemarysgranddaughter Member Posts: 7
    edited June 2021

    Hi! It’s a small sample size, but no one I know who has had a PBM (myself, my two cousins, the women in my previvor group chat) have chronic pain as a result of it. We are all in our 20’s-40’s so I’m not sure if that’s relevant, but it is not common among the people I know. Hope your doctor is able to set your mind at ease on this front

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