Hello
Please forgive me if this question has already been answered fully, but I wondered if anyone could please give me some advice/reassurance. I had surgery for invasive lobular cancer on Monday 2 April, and since Thursday have been getting searing pains along the inside of my arm, from armpit to elbow. It’s a shooting, burning pain – like molten lava running down the inside of my arm. it feels almost liquid – really as if burning fluid has been injected into my veins. Also, the area is incredible sensitive – again, a burning sensation when my clothes touch, or when I move. I am trying to do the exercises, but this level of discomfort is making movement difficult. Yesterday I went to A&E, and the doctor said that the cause may be nerve damage, a common enough occurrence when lymph nodes are taken out. And if so, the damage would be permanent. Has anyone else experienced this and gradually regained full and ‘normal’ feeling in the arm.
thank you for helping me.
My beautiful partner died six and a half years ago, aged only 41,and I have decided not to tell my ancient parents or brother that I have cancer, so I feel very much alone right now. I have lovely friends, but I feel terribly lonely.
Dear stoic65
Welcome to the forum. I’m sure other members will be along soon to offer you support.
Please consider giving our Helpline a call as well. They are there for information and support especially when you are feeling so alone. They will be open again on Tuesday. Normal opening times are 9-5 on weekdays and 9-2 on Saturdays. The number is 0808 800 6000.
Very best wishes
Janet
BCC Facilitator
Hi Stoic65
You could have been describing how my arm felt after my surgery which included a full node clearence. I had the surgery in December 2010 and now I have full movement and NO residual pain. There is still a tiny area which feels a bit numb when I touch it.
It gradually improved over time and I think the pain was gone within a few weeks. Keep up with the exercises as best you can because that will help with the pain and you WILL get back to normal.
I’m sure there will be others along who have had their surgery more recently to help you to know that what you are feeling is very common.
All the best for your recovery. x
I can’t comment on the nerve damage as although I had my nodes removed the discomfort was temporary and not particularly painful. Under my upper arm is still a little numb.
However what I have posted to say is please visit the forum regularly and you will begin to feel a little less lonely. I know its not the same as having a real hug and being able to physically cry on a friend’s shoulder…but its the next best thing…we don’t mind hearing your problems or your fears cos we have or have had very similar ones.
Dont forget to join, if you havent already, one of the threads relevant to your treatment ie rads in May or chemo in April etc…
Virtual hug for you
Mary M
Hi
I didnt have node clearance but had a mastectomy and implant recon at the end of January. I have had a lot of nerve pain since the op and am managing it with Amitriptyline which was pscribed by my GP. You can start on a low dose and increase as needed though obviously discuss as you go along with your GP. I am up to 25 mg a day having started at 10 and will probably be on it for another couple of months.
Hope this helps and hope things start to. Prove, it is early days for you and I certainly found that I improved considerably week by week. Take it easy and get as much rest as you can.
L x
Hi I had mastectomy and axillary node clearance in Feb. I had the same problem it’s really painful even when cloths touch it. I saw physio and I have cording it even hurts in my wrist if I stretch my arm. I keep doing the exercises and although not gone it has improved. I read somewhere that it will go after a few months without treatment. Contact the physio she should be able to advice you. Good luck.
Had mastectomy and node clearance in September 2009 and had the symptoms you describe in inner arm; I remember only too well how unbelievably painful.I too was precribed low dose amitriptaline though warned it could take some time to kick in. Either it kicked in or the nerve pain melted away by itself but either way - the pain DID go and I came off the amitriptaline some weeks later (got some jolly good sleep while on them too!). Dont want to disappoint you as its not the same for all of us but I have never regained sensation from the inside of my upper arm right up to and including my armpit. Weird to touch, strange to apply deodorant but not really a problem!
Hi, I also had axillary clearance and mx for ILC and had very similar pain to that you describe. I remember being terrified someone would even brush my arm as the pain was so intense. I also had shooting pains across my chest.
The nerve damage may be permanent but it doesn’t mean that the pain will be. What resolved this for me was time and the exercises. I found the exercises incredibly hard for the first 6 weeks and had difficulty raising my arm and then of all of a sudden I got movement back. The pain just gradually diminished.
I am left with a loss of sensation on my chest, under arm and the top part of my arm and back edge of the shoulder. Okay it’s a bit strange but i don’t worry about it anymore. I think when you have pain you become more conscious of it and when that diminishes it just becomes the new normal.
I hope things improve for you soon but remember it’s very early days.
take care, elinda x
I have permanent nerve damage, not BC related and was told by surgeons that nerves can take up to two years to heal, so hopefully your pain will go, after the two years it’s considered permanent. xx
Thank you all so much for finding the time to reply. I know this forum will prove a lifeline – you have already done much to help me. Today I’ve decided to put a surgical support stocking on the arm, and it seems to be helping. It is at least keeping the arm tight and protecting it a little from that sudden scalding sensation I feel when something brushes against it.
Thank you
Hi,
Mastectomy and full lymph node clearance and LD reconstruction 6 weeks ago. Doing well, BUT I had the pain you are describing. Either day 2 or day 3 and I was completely unprepared. The pain was excrutiating and unexpected - and thereby terrifying. I was told immediately that it was normal - if only someone had warned me beforehand!-and I was prescribed tramodol, a powerful pain killer. Happily I didn’t react to that painkiller. I took it for about 5 days and then eased off and apart from a few short bursts of a much less intense pain a few times I did not have it again. I agree that starting the exercises seemed to help.
Sensation has now returned in my underarm etc.
Good luck.
V xx
Hello
I had a mastectomy and lymph node clearance on the right side just over a week ago and i am sore but taking pain killer but am otherwise fine. its not as bad as i thought it would be and as soon as i woke up from my surgery i got up and put on new pyjamas and done my make up and painted my nails for my visitors coming.
i just want you to know its now all bad. xx
Hi
I had mastectomy in Dec then had lymph node clearance in Feb. I had a variety of pains and initally under my armpit felt like a tight piece of string, which cause a lot of discomfort on moving. I persevered with exercises and the movement and pain has improved though not fully gone. I am also numb under armpit and top of arm. I aslso get a bit of swelling that comes and goes from time to time under mastectomy scar down to ribs, this could be due to chemo so have been told to keep an eye on it.
Jane
Hi Stoic,
I have just seen your post on this forum from 2012 and really felt for you. I understand a little as cant tell my family either. I was wondering how you are now and hoped that you are not still feeling lonely. If you are, you have a friend here. Not sure how this works but get in touch if you need an ear to talk to, Kate