Had mast and immediate lat dorsi recon 6 months ago - on the affected side my shoulder blade area and down to the middle of my back keeps swelling up - never goes down completely and is getting worse. I get sharp stinging from time to time in middle of my back when leaning forward and am waking in the night now with pain in the shoulder blade and the most intense itching down my back which makes me wish I could scratch my very bones!! Arm gets tired and heavy but not sore just a bit of a dull ache really and find my watch feels tight early evening. Is this possibly lymphodoema? Also for the last couple of weeks I am so exhausted, why is this when it is 6 months now since my op!!
luv, Carole xx
It sounds horrible.
I have lymphoedema in my arm, back, chest wall - side and front so that although i have had a mastectomy, the front bit swells so it looks like a mini boob!!!
I think you ought to see someone though and try to quickly as well. Your arm sounds very much like lymphoedema so you need to see whoever is your lymphoedema specialoist as soon as possible to prevent it getting worse.
Regarding the pain and itching and tiredness - you are obviously worried about the worst obvious scenario - like we all do everytime we get a new symptom - you must see someone, even if just to put your mind at rest.
Oh how I wish I could as you try to find your profile easily - it makes it so much easier to answer if you know what that person has beeen through - I’ll struggle on!!!
Tiredness - who knows why?? Did you have chemo and rads as well as mastectomy and recon? The tiredness can often rehit you later - is it because then we are trying to take stock of what we’ve been through and that is emotionally draining in itself. Have you been overdoing it?
Again, I think you are quite rightly worrying incase this tiredness is linked to bc returning so again unless you see someone, you will never know why you are tired.
From reading this forums, it seems some GPs and oncs are more sympathetic to worries and symptoms than others and some women seem to have to push really hard to be listened to and to get appropriate scans etc. Be strong and see someone and push for whatever will make you feel happier ie seeeing the onc or GP or if you want scans/blood tests etc.
From what you’ve said, the lymphodoema referral needs to be done but you need to be listened to about your pain and itching.
PS - have you put this in reconstruction part of the forum as some people who may be able to help you better don’t always look at all parts of the site
I agree with Kate - sounds like lymphoedema and you need to be seen asap - and make a fuss if necessary.
The itching sounds familiar to me - you itch but scratching doesn’t help because you’re numb and the itch seems to be coming from inside anyway? But as Kate says, best to get it checked out anyway.
Ditto the tiredness - seek advice. If it’s any consolation, I was told that it would be about two years before the effects of everything that had been done to me, particularly the chemo, were fully out of my system.
Let us know how you get on.
Itching sounds very familiar to me. My armpit itched like mad but as I cant feel anything when I scratched it it was driving me mad. My watch didnt fit & my fingers swell if I do a repetative task for too long. My arm swells too.
I asked the breast nurse & the docor looked at it. They confimed that it was lymphoedema but as there was no infection not to worry too much. If it gets any worse I was to ask again.
Carole - I would get it checked out to put your mind at rest. As for thr tiredness I ttoo was advised by BC nurse that it could be 2 years before I fire on all cylinders again ( laughing -sounds good to me as not sure I ever have fired on all of them )
Take care Carole & let us now how you get on
I would think it is lymphoedema. Get advice/treatment soon , before it gets any worse. I too have lymphoedeam on chest wall (like Kate - little mini boob - LOL) all over clavicle area and over back, especially where the braline sits, so quite uncomfortable sometimes. But, I don’t have any swelling in lower arm or hand. Apparently you can get it on other places, not just the arm. I do gentle massage, and it does help. Are you on Arimidex? I had terrible itching, but since I stopped them, I am fine now. Sounds like an allergic reaction to something you are taking.
Best of luck and hope you get it sorted.
Have they given you a sleeve, shown you massage/exercises or referred you to a lymphoedema clinic? It doesn’t get better on its own and may get worse if you don’t have help.
Just because it isn’t infected it DOESN’T mean they don’t have to do anything about it!!! It’s much easier to control and treat if you catch it early and from what you say it sounds as though you should be getting some help NOW. With my cynical hat on I would suggest that there is a bit of ‘rationing’ going on here…
Tippy - please do as Bahons2 says.
Lymphoedema does not go away on its own and if it is not treated by exercise, manual lymph drainage or a sleeve, it will get worse and then it’s harder to treat.
You are more likely to get an infection if your lymphoedema worsens. I’ve had 2 infections - been on lots of chemo - and each time I’ve been left with worse lymphoedema than I started with.
Please look at the lymphoedema website - can’t remember what it is called now or ring the nurse here on site for more info and that should give you the ammo you need to be referred to a specialist. I feel it is really poor care you are having if they are not recognising that your lymphoedema needs treatment.
Sorry - probably worrying a lot of you now but the treatment of lymphoedema in much of this country is appalling and we should all push as much as we can for help.
Lymphoedema is miserable and we should get NHS help and not rely on private systems. Rant over.
I think the lymphoedema site you are thinking of, Kate is: www.lymphoedema.org (the Lymphoedema Support Network)
Also, www.uklymph.com may be worth a look, too.
I’m glad you had a rant - I think lymphoedema recognition and treatment in the UK is nothing short of scandalous sometimes, too!
Bye for now…
Thanks for your comments. I was a little miffed(!) when the doctor sort of dismissed it but its certainly not getting any better. I will give the BCN a call next week and ask her about it again.
I did ask if I should be doing an exercises etc but the doctor said " no there is nothing that you can do about it". However I have taken to doing my own thing & doing the advanced exercises & a few that were on a leaflet that I had downloaded from this site.
I will check out the web sites & let you know how what happens.
Thanks so much for all your replies and all the best to you all too.
I got really upset yesterday afty and my OH has phoned my BCN so see her on Monday morning, will let you know how I get on. I spoke to her over a week ago and she thinks it may be lymphodoema, guess I just really want it not to be that but at the same time am worried that it might be or even that the BC is back.
Not an allergy, I have several allergies but not taking anything new. Not on Arimadex and did not have chemo or rads. Bahons2 you described exactly what the itching feels like.
I have done more the last few weeks than I have done to date but still feel that I am a right lazy sod! OH always says there is not a lazy bone in my body but have always been one of those people who are on the go all the time juggling loads of different things. Yesterday tho I was almost on my knees with fatigue I can’t settle to rest until certain things have been done, due to me then lying down feeling guilty at being lazy and worrying what will happen cos I dont get things done.
Anyway, thanks again to you all and have a lovely weekend, keep you posted.
luvnhugs Carole xxx
Saw my BCN Monday morning and see the lymphodeoma people tomorrow at 3pm. Will let you know how I get on.
luvnhugs to all, Carole xxx
Just an update, saw the Lymphodoema nurse yesterday and after measuring and checking me over she advises it is early stage lymphodoema in my back and also in the arm. Have been given more exercises to do and also light massage then reassess later this year to see if that keeps it in check and if not it will be taping.
take care, luvnhugs Carole xx