Pain After Lymph Node Removal Surgery

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asjones
asjones Member Posts: 7

On the 18th my wife had lumpectomy and sample lymph node removal done. The pain form the lumpectomy is not bad but a week and half after the lymph node removal site is still extremely painful. I got her to go for a car ride just to get her out of the house and she was miserable with every bump and turn. She describes the pain and either a massive saw blade was used under her arm pit or a 2x4" board under their.

How was the pain for others? Any suggestions on helping to ease the pain and speed/improve the healing?



Comments

  • TexKat
    TexKat Member Posts: 17
    edited December 2019

    I had a similar procedure on the same day as your wife! But I had the full axillary lymph node dissection, I don’t yet know how many nodes they removed. And like her, the lumpectomy site is fine but my underarm is uncomfortable/painful. I think the drain is causing more discomfort than the actual node removal site, although the scar there is pretty large. I am being very careful to not lift anything with that (my left) arm, and to not turn on that side in bed. I have taken some pain meds when it bothers me a lot, but find that regular Tylenol is almost as effective. I'll get the drain removed on Monday and hope that helps with the discomfort. Also, the back of that arm is numb and I am REALLY hoping that is just a temporary thing.

    Overall, I would describe what I am experiencing mostly as discomfort, and only occasionally morphs into a consistent pain.

    Does she have a drain?

  • asjones
    asjones Member Posts: 7
    edited December 2019

    Wow, same day, She does have a drain and it is bothering also but thinks it is the are from the large scar from the nodes instead. She is trying not to move her arm ad even extra strength Tylenol is not helping and she is out of the strong stuff. Her doc won't remove the drain until she drains less than 30 CCs of fluid in a day (45 total today so still way to much).

    thanks for the reply.

    Really hoping someone had some suggestions to help.




  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited December 2019

    My lumpectomy with just one node removed was in July 2018. I still have to sleep with a pillow between my arm and body in some positions. Keeping it moisturized with Eucerin or something similar helps a bit once it's fully healed. But it's the crappy gift that keeps on giving.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2019

    Sorry for your pain. Both of you may want to be sure to get a referral to a certified LE therapist. Below is the link to a great site created with lots of input from BCO members.

    https://www.stepup-speakout.org/


  • Yogatyme
    Yogatyme Member Posts: 2,349
    edited December 2019

    I also had significant armpit pain from node removal. I had some cording and the surgical bra dug into the swollen area of my armpit. It was the most painful part of my surgery. Faithfully doing the exercises finally resolved the cording and the swelling improved quickly after drains were removed. I hope your wife finds some relief

  • asjones
    asjones Member Posts: 7
    edited December 2019

    AliceBastable, wow I am amazed you are still in pain. How about during the day are you able to move your arm above your head without pain?

    MinusTwo, My impression was if it just one or two nodes were removed lymphedema was very unlikely.

    Would this be Lymphedema with one node removed and a week and half after surgery?

    How does one tell if it is lymphedema vs surgical/mussel/nerve pain issues?

  • asjones
    asjones Member Posts: 7
    edited December 2019

    YogaTyme .... she was not given any exercises to do by the surgeon/hospital. In looking online there seem to be a variety of exercises, but the pain keeps her from wanting to move her left arm to do much.

    Hopefully she can get the drain removed soon. The surgeon does not like to remove the drain till the fluids let up enough and so far that has not happened. Thus presenting additional discouragement :(


  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2019

    LE can present any time up to 20 years, and yes from just one sentinel lymph node biopsy. It's not common, but still..

    Call the doc and get a list of recommended exercises for her specific surgery & physical condition. It's most important that she do the prescribed exercises several times a day. But that may not mean for the first two weeks. All docs are different. When is her post op? If she will force herself to at least walk some every day, that will help get the body recovering.

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited December 2019

    Mine's just in the one small spot where the node incision was. It's not so much painful as annoying, like getting rubbed with sandpaper unexpectedly, and just noticeable enough to not let me forget it's there. But it's not constant, and doesn't restrict movement. Sometimes I think it's as much from the radiation and extremely dry skin pulling the scar - hence my advice to use Eucerin or something similar.

  • flashlight
    flashlight Member Posts: 698
    edited December 2019

    asjones, I didn't have a drain, but the BS used an old surgical incision site to remove my sentinel node under my left arm. My RO said it would take a year for the swelling to go away. It is almost gone. I didn't start wearing my normal bra until last May and that was for a few hours a day. I did the exercises and stretches, but it remained tight until late August and it was hard to lift my arm over my head. Today, I have minor discomfort at times, but can lift my arm without difficulty. One thing that did help was Gabapentin 100mg for nerve pain. I took one before bed. You have a lot of nerves under your arms. I also used ice 20 mins on 20 mins off for the swelling and pain. Hope your wife finds relief soon.

  • edj3
    edj3 Member Posts: 2,076
    edited December 2019

    I think most of us would tell you that the sentinal node surgery is surprisingly painful.

    I've had 7 major abdominal surgeries, my sinuses drilled out (yep the bones) and some other stuff done. This sentinal node removal was right up there with the worst of the worst, to my complete surprise.

    Finding bras that didn't cross the incision was difficult. I had the best luck with AnaOna bras, what a relief to put one on and NOT be in pain from the bra.

  • flashlight
    flashlight Member Posts: 698
    edited December 2019

    I agree with edj3 comfort is a number one objective. After giving this more thought your wife just had the surgery. Did she go for her follow up with the BS? I wouldn't push the exercises until the BS gives her the ok. I really didn't do anything until after that visit and I started with trying to crawl up the wall with my hand. I also found that my primary doctor was more helpful with the pain control issues. Your BS might be tied in with the hospitals pain regime guidelines. I received only the medication that was approved for my surgery and only enough for one week. If she can tolerate Ibuprofen that helped me with the pain/swelling. You have to take 400 to 600mg every 6 hours for the first few days.

  • TexKat
    TexKat Member Posts: 17
    edited December 2019

    i'm not supposed to exercise with that arm until the drain is removed (which should be this afternoon.). You don't want to do anything that could shift or dislodge that drain

  • asjones
    asjones Member Posts: 7
    edited January 2020

    Sorry I have not responded thanks for all the other posts.... Her pain is still there but maybe down a little and can't move her left arm much. She had one post op follow-up 5 days out and the next is not planned until she drains less fluid. I know the drain also is bothersome and mentally it is also hard. Unfortunately her fluid level is still high enough not to get the drain out.

    I understand but hate for my wife's sake hearing that many have pain/tenderness 6 months and a year out. Hopefully she does not go though that.


  • HeartShapedBox
    HeartShapedBox Member Posts: 172
    edited January 2020

    @ asjones, I had a mastectomy and 8 nodes out 5 days ago, and the lymph part/ armpit/side is DEFINITELY the part that hurts (feels like I'm holding a large pinecone in my armpit, and lots of nervey pain and tingling). It helps to have a small pillow between my arm and side, so there's less pressure or rubbing on the area. I also sleep with pillows propping my arm up and away from my side. I would encourage your wife to use her arm and hand a bit- just gently; use it to hold a cup of coffee, pull up pants, etc, just nothing repetitive or that lifts arm above the shoulder. I know too well it feels better to NOT use that side at all, but I was told that actually can make pain and recovery harder in the long run. A bag of ice feels uncomfortable at first, but it can help ease pain a little. I wish we had better options (& that DR's weren't so hesitant to give us more than a few pain pills!), but sadly I think time may be the biggest factor. Hoping your wife feels better soon!

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