Post mastectomy pain, numb below scar, one month later

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happyhiker1
happyhiker1 Member Posts: 24
edited September 2022 in Surgery - Before, During, and After

I had my mastectomy 4 weeks ago (left side) along with axillary dissection. It is still very painful, especially the underarm area and I assume is mostly due to the dissection, especially as this is the 2nd time around for me (local recurrence, 2.5 yrs ago a lumpectomy and nodes removed). I still can't lift my left arm more than about shoulder height, very painful. Tylenol does nothing to help with the pain and I want to avoid stronger meds. But I read on the forums that for some, there is relatively little pain post mastectomy. I wonder if it is really the dissection that is causing the most pain in my case and if anyone else has suffered this long after the mastectomy with nerve pain; and, does it eventually go away??

Also, I have only recently allowed myself to touch the scar area and I notice that below the scar on my chest everything is numb, but not above the scar.

Is this normal and does sensation return eventually?

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  • LW422
    LW422 Member Posts: 1,312
    edited August 2022

    Yes; unfortunately what you're describing is typical for a lot of people. I believe the ALND is the biggest contributor to the pain and weirdness after a mastectomy; people who don't have lymph nodes removed seem to fare much better. I had a single mastectomy with ALND a year ago and I still occasionally have that "tennis ball in my armpit" feeling, tightness, and a definite numb area on my chest and back of my upper arm. Some days it makes me crazy, angry and frustrated... but apparently that's my life now. I also had 33 rounds of radiation which added to the tightness, so it has been a real party.

    Hope my post doesn't depress you; chances are your symptoms will be short-lived and you'll feel better soon. If you can get to a PT appointment, it will be good to start gentle exercises to increase your range of motion. Please check with your doctor before beginning any exercise, though. Good luck to you.

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  • Rah2464
    Rah2464 Member Posts: 1,647
    edited August 2022

    Happyhiker yes this is common. Did your surgeon send you home with prescribed exercises to do for range of motion? If you have those, get going on them as directed. It is important to work that shoulder before it freezes up. As far as the armpit sensations my PS had me begin sensation therapy. Started with a damp washcloth in the shower just massaging gently over the area, progressing to a dry washcloth, then to a vibrating massager to "wake up" the nerves. Did help eventually with discomfort.

    Reach out to your surgeon, it sounds as though you need some focused PT to get you started. It is nuts to me that a round of PT sessions isn't "standard of care" given how impactful these surgeries are. Working with a PT will also give you the confidence to do exercises at home and to do them correctly.

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  • happyhiker1
    happyhiker1 Member Posts: 24
    edited August 2022

    Thanks lw422 for replying and sharing your own experience following ALND. I'm beginning to relate to the 'tennis ball under armpit' analogy! Really uncomfortable a bit everywhere under arm, behind arm and especially where scar reaches armpit.

    I will see surgeon this Tues and will bring up need for physio with her and hope she explains what exactly she had to do during surgery that causes this. I hope your symptoms end up disappearing, I guess nerve regrowth takes a long, long time!

    Thanks!

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  • happyhiker1
    happyhiker1 Member Posts: 24
    edited August 2022

    Thanks rah2464 for your reply and advice. I will try the washcloth approach in addition to the basic arm exercises I was told to start once drain was removed. When I mentioned the ongoing pain to a nurse, she thought I should perhaps reduce some of the more painful ones, thought they might be exacerbating the nerve pain problem. I'll see what the surgeon says this next Tues.

    Many thanks for your advice!

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  • LW422
    LW422 Member Posts: 1,312
    edited August 2022

    Good luck, HappyHiker. You'll probably get tired of hearing "it just takes time." Each of us is different in that regard. Take care and I hope you feel much better soon. Hugs.

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  • sleepylibrarian
    sleepylibrarian Member Posts: 9
    edited September 2022

    For many people, it doesn't just take time, though. It takes physical therapy, nerve blocks, pain killers, and occasionally surgical interventions to remediate damaged nerves. Additionally, the longer you spend in pain, the more likely the pain is to become chronic. Please do not treat your pain with stoic acceptance and patience alone--tell you doctors you are experiencing pain. If you are being treated at a comprehensive cancer center or even just a larger hospital, ask to see a pain management specialist. Detail the kind of pain you have, how often, and how severe, and ask for a plan to improve it. Your doctor should be able to figure out the origin of the pain (which nerves are involved, and whether it is likely because of entrapment, damage, inflammation, etc.) and develop a plan to treat it in the short and long term. Ask for contingencies--ie, if this isn't working, what would we try next? How long should we try X before we try Y?

    And Good luck!

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  • Rah2464
    Rah2464 Member Posts: 1,647
    edited September 2022

    Sleepylibrarian - well said and very good advice.

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