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Arm still feels odd after full lymph removal

15 REPLIES 15
LouJP
Member

Re: Arm still feels odd after full lymph removal

I have no pain thankfully but its so weird to explain xx

Glade
Member

Re: Arm still feels odd after full lymph removal

apologies for the delay in replying.

In case you are still wondering - I had my surgery in June last year and my underarm still feels weird, as you put it. I do my anti lymphodaemia exercises and massage with cream. It doesn't hurt and I'm getting the impresio that it's considered normal.

LouJP
Member

Re: Arm still feels odd after full lymph removal

Too short indeed!!!!!

We are strong and can do this

xxx

delly
Member

Re: Arm still feels odd after full lymph removal

Hi geordiedevon

From your description, It sounds very much like you have a trapped nerve - certainly something is "irritating" the nerve, and likely mechanical meaning muscular, boney,  or knotting or constriction, which would ideally benefit from some stretching and manipulation. Either by a physio (which your Breast Care Nurse will be able to arrange for you. Failing that, either go see a private physio OR a recommended osteopath, as they concentrate on direct manipulation of the soft tissues, muscles and joints, and manual stretching. Again it could be classed as cording, where the now "redundant" lymph vessels can shrink and tighten.

Hi again Lou - Yeh I agree with aftermath. It's a bu**er. Likes to keep us reminded, for a while anyway. It WILL begin to migrate from the front of your daily thinking and mind, to a more remote part, and no longer a waking daily thought. Took me up to my 5th annual check up and being signed off from any further ones, to stop worrying or thinking about it coming back, and about secondaries. Rarely think about it now, except if I stand topless in fron t of a mirror that is. But I don't that. I DO keep vigilant about any changes, new complaints, differences etc. and get anything checked out immediately. GP's also tend to be more attentive and vigilant too, when have a history of BC.

But rather than wasting mental energy and mental stamina in worrying and constantly thinking "What If"s, which actually stops and prevents you from moving on from BC,  I find it faaar better, more productive and, to think "What if it NOT"s. I'm GOING TO book that holiday, not wait and see, I'm going to change my job, I'm going to go back to college and retrain in something I enjoy more or always wanted to do, gonna get that degree, move to live near the sea etc., etc. J.F.D.I. - Just  Ffflippin (polite F word!!) Do  It, I say girls 😋, cos L.T.F.S. - Life's  Too  Ffflippin  Short  NOW, after what we've all been through with Ffflippin BC, hey?!! 

Lots of love to everybody,

DoolallierByTheDayDelly 😊      x❤️x❤️x❤️x

LouJP
Member

Re: Arm still feels odd after full lymph removal

I am 9 months on and good/bad days with my lymphodemea

The egg description is good - i feel sometimes i am swollen under arm but it isnt

Cancer has gone but the aftermath lingers

x

geordiedevon
Member

Re: Arm still feels odd after full lymph removal

I had a wide insicion and lymph note removal. Sometimes when I massage it's extremely painful (needles, very tender) I was told it's the nerve endings and not to worry. Some days it's fine to touch. Some days it's uncomfortable having my arm by my side, like there's an egg in my bra. Again breast care nurse says that's ok. 10months sine surgery. Last few months my outer upper arm has been sensitive to touch and painful to lie on in bed. Almost into my collar bone I feel pain if I try to lie on my surgery side, yet it was ok a few months ago. Limited movement, particularly when unhooking my bra so find front zip ones easier. Doing excersises daily , felt like I was getting better then a back step. 

LouJP
Member

Re: Arm still feels odd after full lymph removal

Yes understand that

thanks all

m123
Member

Re: Arm still feels odd after full lymph removal

I get a weird feeling sometimes too. I think for me it's a combination of numb cut nerves and some swelling from lymphoedema. It's not painful at all, but it is disconcerting.

delly
Member

Re: Arm still feels odd after full lymph removal

Justplainpat  - Hi again.  I would speak to your Breast Care Nurse about your discomfort before anyone else, certainly before your GP. Her work is directly related to breasts and any problems following surgery. Whereas your GP isn't. Preferably make an appointment to actually SEE her, as opposed to try to explain the pain and discomfort in words over the phone, but obviously if she can't see you soon physically, then you'll have to have a consultation on the phone, But she'll still probably want to SEE you. SHE'LL be able to advise you and point you in the right direction for whatever is needed.

As I said before, please will you let us know your outcome. x x x

Jaybro
Member

Re: Arm still feels odd after full lymph removal

And a message to justplainpat 

If your pain is debilitating and feels nerve-related AND if you had chemotherapy, you may be experiencing neuropathic pain. Mine became really noticeable across my scar and under my arm once radiotherapy kicked in after a couple of months. Your GP can prescribe medication for neuropathic pain - it really does work but it also works so well on anxiety that I’m reluctant to stop it now. It doesn’t help with that disconnect between what’s real (a scar) and what the brain is feeling (swelling), unfortunately.

It’s just something to consider x

Jaybro
Member

Re: Arm still feels odd after full lymph removal

Hi Lou

It’s over two years since my mastectomy and axillary clearance. My elbow skin feels tender, then everything from the outer arm up to the armpit is numb. I’m not sure how deep it goes (when I get an itch, it a b*****) but it’s more than just the skin.

There is a disconnect between this and the discomfort under my arm which is damaged muscle and scar tissue - one needs building up (more exercises that get skipped when they shouldn’t); the other needs breaking down (even more exercises and massage - which I do do). I too get that swollen feeling under my arm and to the side of my scar - it feels like there should be a huge swelling there but there’s nothing. I think after major surgery, sometimes not everyone is lucky.

A lot of nerves are inevitably severed during this type of surgery. Some heal, some heal for some people, some just don’t heal and you get used to the strange sensations. So long as you are sweeping up and across and are massaging the area appropriately, I’m told it’s pot luck as to how well it heals. I’m still optimistic.

It’s early days - just treat it kindly xx

delly
Member

Re: Arm still feels odd after full lymph removal

Hi LouJP and other ladies

Had masts with full ANC 2006 and 07. 

I DO have a medical background.  It's difficult to remove all the underarm nodes without disturbing or damaging some of the close or nearby nerve endings.  Some of your feeling WILL return, but don't be surprised if your left with some remaining numbness. My inner upper Right arm and first two fingers (yes those two✌️!!) are still slightly numb. Takes a long, long time for nerves to repair. They can and do, but not always fully.

Justplainpat -  The discomfort your describing may be due to "cording", which usually affects the arms, but you can get cording in the upper chest muscles. I've heard of other women having it. It's greatly helped and sorted by physio - them s t r e t c h i n g and working on the muscle mobility + exercises for you to do. Why don't you get back in touch with your BCN, tell her about it so she can ref you to the physio dept. As above with the numbness - just takes a looong time.  Let us know how you go on ref your pain, BCN and physio, will you lovey. I'm really interested to know.

Lots of love to everyone,  Delly-give-it-some-welly 🙄 😜 ❤️ xXXx

Evie-S
Community Champion

Re: Arm still feels odd after full lymph removal

Hi LouJP - I had my surgery (mastectomy and node clearance) almost 4 years ago and I well remember that numb feeling. Gradually a lot of the feeling has come back now. I’m not medical so I don’t know what causes the numb feeling or how it has changed, but it feels a lot more normal now. All the best to you, Evie xx

LouJP
Member

Re: Arm still feels odd after full lymph removal

Hi Pat

Thanks for your response and it is good to know others find it weird too!

It is sonetimes like something is under your arm as you say which is the swollen feeling but there is nothing there.

Get feeling crotchety - some days you cope and some days you dont.

Stay safe

xx

Justplainpat
Member

Re: Arm still feels odd after full lymph removal

Hello @LouJP 

I can certainly identify with your ‘weird’ discomfort. 

I had a mastectomy in December ‘19, followed by a full lymph node clearance in February ‘20. A year down the line, I still feel that disconcerting sensation you describe. Some days it is downright painful and debilitating, other days just a nagging discomfort. But always there, and so alien it is almost impossible to describe. I feel as though there is something preventing me putting my arm tight against my side, as though I am clutching something under my arm whilst wearing a barbed wire vest. It interrupts my sleep and makes me generally crotchety. The pain across my main mastectomy scar has gradually lessened and I continue to hope that this weird nerve pain/ polystyrene-like numbness under my arm will gradually subside too. 

Sadly, I can offer you no advice or solutions. But, yes, I am certainly there with you! 

Pat x

LouJP
Member

Arm still feels odd after full lymph removal

Hi

I had a lumpectomy and full lymph node removal in July last year.

My breast is slowly less swollen and the scar pulls less and I do have lymphodema which is mainly under control but with sleeve and glove.

Does anyone have or remember the weird numb type feeling around/under the armpit.

Some days I hardly notice it but other days it feels like it’s so swollen but it isnt.

Its not painful just weird.

Just interested what others have felt.

Thanks and stay safe

x