Hi everyone
I haven’t used the forum for a while, as I’ve been away having surgery and now getting used to the idea of mastectomy, reconstruction and post surgery blues. The thing that is getting me down the most is the thing nobody told me about before the op.
The lymphatic drainage system under my arm (running to my wrist) has tightened up and caused cording. It has shifted from the axilla and now affecting my forearm mostly. Annoyingly, it feels better some days and I think: “Great, it’s going…” and the next day it gets worse again.
The breast care nurses have just told me that it goes eventually and you have to keep exercising, stretching and massaging the area. I don’t really understand what causes it and why some people are affected and some aren’t and what (if anything) can you do apart from what I’ve already been told.
Has anyone else experienced this painful condition and can report how long it took to go …if indeed it does go?
Lotty
hi Lotty
You’ll find a lot of postings on the site about cording. My BCN explained it as a blood vessel or lymphatic that was no longer necessary after surgery i.e. it supplied blood to or removed lymph from a piece of tissue that has been removed. The tightening is caused as it forms scar tissue so the advice they give about stretching,massage and exercise is right. You might find it useful to have some help from a physio to identify exactly how best to exercise and stretch the affected area. My cording came and went for some time but since seeing the physio is steadily improving and now only causes pain when the physio gives me a new set of exercises.
Hope this is some help. keep stretching
Lv Crispy
I too had cording after node sampling. Physio was brilliant and worked with me to get it sorted. Basically stretching, massage and generally using the arm was the way mine got sorted. Mine was from axillia to elbow but I also have scar tissue in my chest so she helped to stretch that too.
Good luck and hope you get some improvement soon.
I have just been discharged from the physio for cording. I only got cording a year after my mastectomy and reconstruction. Mine was from the elbow to the wrist but when I went to the physio she found it was from under my arm to the wrist. She did a lot of massage and stretching and gave me simple exercises and it went better in a couple of weeks. She says there are still some small nodules there but just to keep up the exercises and massaging.
As you say Lotty nobody tells you what to expect at all. My reconstruction is still very uncomfie and if I mention it I just get told it will take time. Having accepted this I am hoping this time next year I won’t be able to feel it !
Best of luck
Love Liz xxx
Thanx for all your comments - Crispy, you seem to have been given more info than I have. It does make sense what you were told about disused lymphatics and scar tissue forming. My physio has said that she will only give me one more session as I now have full mobility in my arm. (I’ve had about 4 sessions) I feel a bit disappointed as the cording is still bad from my elbow to wrist. I have varied my exercises now from the ones in the b/care info/exercise sheet and just pull my arm in the most extreme stretch I can and hold for as long as poss - (against the wall or straight up in the air) massaging at the same time. My forearm seems very slightly swollen and is very slightly dimply (a bit like very mild cellulite) I hope the swelling doesn’t mean that I am developing lymphodaemia. It is only slight.
I do feel as though the breast care nurses are quite impatient with me about my anxiety about the cording and fob me off with the “it will go in the end” line and don’t really bother to try and explain or make you feel any better about this prob.
Lizzie - I was wondering what sort of reconstruction you have had? and what the discomfort is.
I had a DIEP flap reconstruction and my new boob still feels quite heavy - as though it is strapped on somehow. It doesn’t hurt but feels tight when I do the stretches and is hard under the nipple area. I’m still waiting for it to ‘drop’ into a shape that matches the other one. Mine was done 3 months ago - so I’m waiting for the 6 month reappraisal time and, like you, hoping it will settle down by then.
Good luck with yours
Lotty
Hi Lotty - I had a LD reconstruction 13 months ago. I have a tissue expander in - I don’t know why because I was told I would have an implant put. I just presume that the surgeon did this as I had radiotherapy. My boob feels so hard and I am not sure if the plan is to replace it with an implant. I haven’t seen my surgeon for a year and only seen him once 2 weeks after the op. I hve different feelings in it and on the odd occasion it isn’t too bad but I am aware of it all the time. I feel the muscle from under my arm (which has a big lump where the muscle has come through) and into the boob. It just feels twisted. Sometimes the only way I can describe it is (don’t laugh) as if somebody has lifted up my flesh and put in a load of plastic carrier bags ! now if you can imagine that you know what I mean !!! also if I catch the boob it is very tender and feels like toothache.
Your BCN sounds very uncaring. When reading your post that the physio will be discharging you my first thought was go to your BCN and show her but you have and not got anywhere.
My physio said that the only way to get rid is the exercises of holding it at the extreme stretch and holding it for 10 seconds. My arm was swollen from the elbow down and I wondered at first whether it was lymphoedema but the physio said that usually starts in your fingers. My physio had me led down and put her hand on my upper arm, pressed down and pulled and that simple movement really helped stretch the cording.
I would keep at them and don’t give up - it’s you who has the pain.
Love
Liz xx
Dear Liz
thanks for that. I think that’s what I’m doing really. I wondered if I was over stretching, as I hold the extreme stretch for well over 10 seconds. It seems to be helping though and I will try to massage down towards the fingertips. If that’s the way your physio did it.
Lotty
Bumping this up for maryfrod