hi finished rads in feb this year and have been on arimadex since, but have had really bad shoulder and arm on surgery site now my doc has refered me to lymphodemia clinic as my arm swells up and really aches, any ideas as to what treatments they will give me, the shoulder pain is in my joints and ive had a sterio dinjection put in , but ive read somewhere that this can in fact be the cause. i shall be grateful for any suggestions re this. as cant find a section specifically for lymphodemia. lynn x
Hi Lynn
I am sorry to read that you are having problems with pain in your shoulder and arm, I thought you may find helpful a publication on Lymphodema that is in the information section of the website. I have added the link for you.
breastcancercare.org.uk/content.php?page_id=1016
Kind Regards
Sam
Moderator
Breast Cancer Care
Hi Lynn,
Sorry to hear about the problems your having with your arm, have you tried THE LYMPHODEMA SUPPORT NETWORK?
karen x
Hi Lynn,
I too have been refered to the local hospice lympodema clinic, I have been given exercises to do and the nurse spent 45 minutes with me, both arms were measured the figures were then put into a computer, this gave the nurse the amount of fluid in my affected arm as oposed to my OK arm. When I was there the swelling was’nt too bad, she said there was about 200 mls if extra fluid. I have another appointment three weeks from the first where she will then decide if a sleve would be beneficial, but due to the fact that my lower arm is quite thin I would have to have a sleve made. There are times when the swelling is so bad that I am unable to put my arm flat against my side, it seems worse at evening, night and morning. They do say it could disapear as quickly as it came, always something to look for!!
Good luck eileenmary
Hi there! Hello to those I haven’t ‘met’, and good to chat again to those of you who were such support during my treatment last year.
There must be a pre-set ‘lymphodemia kick-in time’ a certain period after treatment! I finished my rads end of 2006 and I have just rang the hospital re: my concerns that i may be getting (have) lymphodemia. Waiting for them to ring me back. My arm is very achy and it is visiby larger than the other one - noticeably my wrist. Am sitting at work at the computer wishing that I was more adept at using the mouse with my other hand - must try harder i think! Its not too bad, re: swelling, but I need to do something before it gets worse i think. Any advice welcome.
How are you doing Lynn?
My lymphoedema started about a month after finishing rads. I used a conventional sleeve until I developed phlebitis - inflammation of blood vessels - caused by a needle prick in my finger of my affected side. Since then my oedema has worsened so my advice is to be very carefull on the node clearance side and avoid getting little stabs by gardening or sewing etc.
I now have made to measure sleeves as the back of my hand swells the most and off the shelf ones don’t fit properly now. I also use compression bandaging at night when it gets really bad but I had 24 lymph nodes affected and had very high doses of rads due to this so I was at high risk of this happening.
Some hospitals offer manual lymph darainage (MLD) which is a special type of massage. Unfortunately, mine doesn’t and the local private person charges £50 a session so that’s a no go!!!
I would advise anybody who is concerned about lymphoedema to ask to be referred quickly to thier local centre for exercises and sleeves and advice.
Kate
i still havnt had appointment to see the nurse and somedays my hands are up like bananas!dont know how much longer i can put up with this pain .i had the steriod jab over a week ago and still no relief as yet especially when i lie on the side at night.going to wait till friday and then contact them myself .i also ripped my nail down to the quick and that isnt healing as quickly as it should i know i need to take care of any injuries to that side, anyway hope everyone is doing ok let you know what happens . lynn x hi tigerlily nice to hear from you again. how are you getting along?
Hi Lynn - I’m fine thanks. Glad to ‘see you’ here - sorry to hear about the lymphodoema problem. Take care of that nail. I have since had a meet-up with my BC nurse, and she’s referred me to the lymphodoema clinic, so am waiting on that. However, s*ds law has come into force - now I’m doing something about it, its gone down again - can’t see any difference now, save for a slightly swollen wrist when you do a left arm/right arm comparison. Typical. I still get pain when I lay on that side, but I have ever since the op. I go for my next check with the consultant in November (a year since any treatment at all).
How has the year treated you? I must say i haven’t been on here for, ooh, at least 8 months so i am out of touch with everyone - I’ve actually had a busy year, had ‘holiday of a lifetime’ travelling across Canada, have changed my life by grabbing any and every opportunity that comes my way (and not regretted a minute of it… so far!), and am well through the process to becoming approved to adopt a child.
Wishing you well, and hope you soon get some relief.
Dawn
hiyah dawn nice to hear from you again and good luck with the adoption. ive got my appointment through its 17 oct so not long now ,cant beleve its a year since my op ,its flown by but at the time the treatments seemed never ending!your canadian trip sounds wonderful, afraid i havnt been able to go anywhere this year, but am really hoping that next will be differant.not back to work as yet got to see what oncologist says on the 22 oct. check ups are a pain as its so worrieing in case they find anything. keep in touch love lynn xx