Pain after axillary node clearance

[maggie59]

Hi All

My op was over three weeks ago and the scar where the nodes were removed is still raised with some fluid buildup and I have, over the past few days developed 'cording' which I think is quite common but is very painful.

Just after the op I had very little pain and extensive movement but I have found that as things heal and tighten up I have become more uncomfortable. The professionals say that it is still early days and due to the pretty extensive nature of the surgery it will take time. I guess that this is right but patience is not one of my virtues!

On the positive side, the pins and needles feeling in the back of the arm is gradually disappearing and although under the arm is numb there is some feeling there now.

You are quite right Jane, we are here and aren't going anywhere fast, except maybe to the chemo board!!

Maggie x

[Katherine62]

Hi Em and everyone else

I had exactly the same op as you Em nine days ago and the muscle/ nerve pain only kicked in a couple of days ago... I think it was all blessedly numb before that! I am gently stretching as often as possible , little and often and using emu oil (must order more, looks like there will be a rush on it!). The pain is definitely manageable and I am trying to think of it as the nerves mending themselves and getting going again.

But I really do feel fr you being stranded in no mans land with your house move and it seems everyone wants to offload you onto your new team but you need help and professional support NOW! Really.

Still you've got us lot. We're not going anywhere fast.


Gentle hug

janeXXX

[LaParisienne]

Hello there!  So great to read that I am not abnormal! I too have a lot of pain after op, 6 days after in fact.  I suppose I will have to be patient.   It was good to be able to get rid of drain.  Yes, exercises are difficult,  but I try to stretch when the painkillers are at their best, (as advised by BC nurse) but very limited still.  Have ordered the Emu oil as recommended by one of you. Will be interesting to see if it works but I have nothing to lose.  Not happy to read on this thread how long it might be before I can drive as my daughter is disabled and needs me, though am glad to say she boarded a bus ( with her walker but still) for the first time in more than 2 years the other day, to visit me in hospital!  Fortunately,  it's my right side which is affected so I might  be able to drive a bit sooner.  Will let you know about the oil.  Seeing oncologist next Tues so I might get some other pain relief. Hope you all find the strength to cope. Thank you all for your insight.

[emilysss]

Thank you Picklepants. I saw my GP this morning and she said best to wait until I move and the new GP refers me to the breast unit there. Hopefully not too much longer.

I hope you are doing ok and the gabapentin is effective.

Emxx

[Picklepants]

Would you be able to see your gp.i honestly think you should see someone rather than battle on.my Gp saw me a while back before my first op and she said please see us for anything you need or if you have any worries.They said they are more than happy to see me if I had problems. Xx

[emilysss]

Hi Picklepants

I am glad they have given you something to help the pain and hope that it does the job.

Today they rang with an appointment for the 19th November (5 weeks after op) but they know I am moving on the 12th so won't be able to go.

I feel more lost and upset now than I was when I was first diagnosed. At least then I wasn't in pain and could use my arm 😞

Emxx

[Picklepants]

Hi Emily
I'm surprised you haven't seen your surgeon yet.Both times now I have seen him 2 weeks after op.I saw him yesterday and he felt cording in my armpit and I explained about the painful sensations I had.He has put me on Gabapentin to help the nerve pain and to carry on with my exercises and if no improvement within 5 weeks then physio.Perhaps this will be the case with you?
Take care xx

[emilysss]

Hi Tomcat

Thank you for posting - it is nice to hear that we are 'normal' 🙂

My pain has improved a lot and now just feels like something very tight is tied around my arm just above my elbow. I would ask my surgeon but 3 weeks post-op and I haven't seen him yet 😞

I hope your pain improves - I have found that very gentle massage helps.

Take care,

Emxx

[TomCat]

I am 13 days post lumpectomy and sentinal node biopsy and experiencing something similar. The pain in the last few days has become worse. I spoke to my surgeon last night who is confident that it is just the nerves regenerating and nothing to worry about. He said it may take another couple of weeks to settle. 

I have found that I am also more swollen in the last few days but there is no sign on infection. As 'normal' as it can be - we appear to be normal (first time for everything).

Wishing you the best in your recover from surgery 🙂

[Picklepants]

Hi Emma
I just ordered the active blue gel so am really hoping it helps.However,I am finding the pain is worse since yesterday.found the bone scan i had yesterday a challenge! i am already on tramadol and codeine or oramorph but they don't seem to make a difference.(I take these as I have back problems) I can't seem to stretch my arm out fully or put it behind my head for the exercises.I am going to phone my BCN to see what she says.Hope you get better soon.It sounds like the emu oil is working for you.
Good luck
Picklepants xx

[emilysss]

Hi Picklepants.

I hope your arm is feeling a bit better by now but if not I really can recommend the emu oil that anx56 suggested. Even just using it for a day it has made a huge difference to my arm. I ordered the Active Blue stuff from Amazon and it is definitely worth a go if you are suffering.

Take care,

Emxx

[Picklepants]

Sorry,meant to put i have just had anc now! This is what happens when i have too much time on my hands 🙂

[Picklepants]

Hi Em
I had snb and wle back in sept.last tues i had wle again and snb.like you I am in pain same places as you! I will be buying that stuff on amazon too.I am glad it's not just me but sorry you are having a bad time too.
Take care
Xx

[emilysss]

Thank you so much for the replies.

Anx56 - my daughter has been massaging my arm where I can stand it and stroking the rest and it does seem to be helping. I have ordered some emu oil (from Amazon) and am very keen to give it a go - it gets loads of good reviews, so thank you so much for the suggestion.

I hope you are doing ok after chemo on Friday and feeling well.

slyolddog - I can imagine how frustrating it was not being able to drive that new car! My current car is not automatic and my surgery was on my left arm so I guess I will have to wait a while yet, but when I do get a new (second hand!) car I will definitely be looking for an automatic. I am trying hard with the exercises and the basic ones are getting easier. The advanced ones are a little trickier but I really like the idea of marking the distances on the wall - reminds me of when we measured our height as kids 🙂

I know you are right when you say it is more of a marathon than a sprint - unfortunately staying power has never been my strong point! This really is a life changing thing, in every way. I hope that your pain lessens soon - especially if you are also going to try the emu oil.

Thank you again for the replies.

Emxx

[Slyolddog]

Hi Em

I can't remember exactly how long it was before I drove after my op, I do remember that after my first op which was the lump removal and senitnel nodes I was driving after 12 days as I felt able to. The second op took longer and I think it would have been around 3 weeks or more, probably not because I felt comfortable doing so but because I was bored of looking out of my window at my recently bought brand new car! The first new car I've ever owned at the grand old age of 52 and I couldn't drive it! That was a motivator I can tell you.  If your op is on the right side then it may be easier to drive as you're not changing gear with that arm.

I see that anx56 has made some suggestions about things you can try and I may even try the creams myself. To be honest you're given so much information along the road that you forget more than half of it, usually the important half. I can however stress that its important to do the physio, it will get easier, trust me. Before I had my op I was suffering from a semi frozen shoulder on my op side (left) and I now have full movement thanks to the physio. If you can in your new house make sure you have an area where you can mark how far up the wall you can reach when you walk your fingers up the wall, this will at least be a visual reminder of your increased movement.  However do expect setbacks, its very easy to overstretch and then find yourself with restricted movement again. Little and often is best and only within the limits of what you can manage.

The whole process is more of a marathon than a sprint so you'll have to mentally prepare yourself for that. We all get there in the end although we're probably not the same people as when we started. I was never one to tolerate fools but I'm worse now! Although at the same time I do appreciate that people may be suffering their own problems which are not visible to the man in the street, so I'm more patient in that way.

I hope your pain starts to subside as quickly as possible and any further stages of treatment go well for you. If you need chemo from my experience while its not pleasant its not the worst thing in the world, just another thing to cope with along the way.

Best wishes for the future. XX

[anx56]

Hi Em,

I have had similiar experience.  I found gentle massaging of of the area twice a day and in the bath or shower does help.  Just excersise when you can just do a few of the easier ones if you can manage. I use e45 cream emoiient.  If you cant reach the back of our arm get someone to do it gently for you.  I have heard just stroking the area with a scarf or a feather helps.  I had a second lumpectomy and lymph node removal in July and the district nurse recommended emu oil or blue ease from holland and barrat it promotes nerve activity and although quite strong as in dont get it in your eyes, it really helped.  If you did try it do not put it on the scar.  My symptoms improved greatly and I had a lot more movement in the arm but had to have a completion mx in sept so have numbness and pain back cant use the emu oil now so use the e45 which seems to be helping.  Persevere it does get better,  the burning and pain does ease the numbness you do tend to get used to.

I drove for the first time 6 weeks after my 2nd op but found it difficult and suffered a bit after.  Automatics are easier to drive if you have one!  I also tried 7 weeks post op from mx but think because of three ops in as many months it will take a bit longer for me.  Think for insurances purpursoses you have to wait 6 weeks so you might want to check with your provider but wish you luck with it.

Hang on in there! Hope I have helped had my first chemo on fri so trying to keep busy!

Take care gentle hugs Xx 

[emilysss]

Thank you for your reply. I am sorry that you are still in pain too. Your description of the feeling is exactly right, although you are six months further on - I don't know what I will do if mine is still hurting next April!

I do feel that I wasn't properly prepared for this - the fact that I may have residual pain was kind of glossed over with the things I was warned about and had to give my consent to before the op, without me having any real understanding of what that could mean.

Can you drive now? If so, when did you start again? I am moving house in 2 weeks and am completely stuck at the moment. I will be starting chemo at a new hospital in a new area and really need to get around.

I hope you are managing ok after your chemo, and that (apart from this pain) your recovery is going well.

Take care,

Emxx

[Slyolddog]

Hi Em

I had my ANC back in May and had a drain in for a week. After it was removed I had a slight seroma which eventually went down. I can't offer you much hope I'm afraid, I finished chemo on October 17th and I am still sore in my op site. It feels like they took out a muscle and replaced it with a bit of wire coat hanger which is too short. I'm 6 months post op and wondering when it will feel better, my BCNs just say it takes a long time. Like you I had to support my arm for ages and could only sleep in my op side after about 3 months. Keep up with the painkillers until you go back for your results and speak to your surgeon then. It will take time but its best to check that all is ok. I hope all goes well with your results.

Good luck on your road to recovery. X

[emilysss]

Ten days ago I had a WLE with lymph node clearance, and I seem to be in more pain now than I was straight after the op.

My arm feels swollen and hot, but they have checked for infection and said I am all clear. Parts of the back of my arm are still numb, but in other areas and my elbow the pain is excrutiating. I am trying to do the post op exercises but the pain of them makes me cry. I am on 30/500 co-codamol four times a day but I can still hardly move. Things improved slightly when I had the drain out on day 5 but I still can only sleep sitting up and have to have my arm supported all the time.

I have an appointment about my results at the end of next week but in the mean time I am wondering if it is normal to feel like this? Will it just settle down eventually?

Thanks for any advice.

Emxx