I had WLE and SNB in Nov 09, followed by chemo and rads. Recently I have noticed that my arm seems to be swelling, particularly if I have been walking any distance and if it is warm. It only seems to be on the bc side. It has got so bad recently that there are times when I have to remove my watch as it seems to be cutting off the circulation.
Could this be lymphoedema?
I have an appointment to see my bcn on 15th May. Do you think I need to see her sooner?
Caroline
Caroline, I had similar op in January, and been advised to keep hand in pocket when walking. I have slight swelling to wrist and arm and have been having physio on it to try and stop it getting worse. Can you not get an appointment earlier? I feel so much better once the physio has massaged it. We are trying to prevent it with me, so give them a call in morning. Best wishes Adi
Hi Caroline,
I am afraid that it does sound like Lymphoedema and it would be good if you could see your BCN sooner. Nothing to panic about but the sooner you learn how to deal with it the better. It would be sensible if you do not wear your watch or anything tight on that wrist.
In the meantime, do not lift anything heavy with that arm as you will irritate it. When sitting place your arm on a pillow to raise it a little. It may be possible for you to move the fluid a little. Place your opposite palm on your arm about 4" away from your underarm and gently stroke 4 times towards your armpit. Then move up 4" and do the same. Keep going until you reach your wrist. Then do the rest of the arm. It takes a while but keep at it. Bare skin, no cream on and gently.
I have Lymphoedema and was taught the above by my specialist. There is more you can do but that should keep you going for now.
E
Hi Caroline
I am posting links to the BCC information about lymphoedema which you may find useful to read:
Please also call our helpline for further support and information on 0808 800 6000, the lines are open 9-5 weekdays and 9-2 Sat
Take care
Lucy
Hi Caroline
As it’s only on one side it is possible it could be lymphodema. I think if I was you I’d ring your BCN and tell her. In our area the BCN refers us on to the lymphodema nurse so she may be able to get the ball rolling before the 15th for you.
It may not be a good idea to massage your arm at all. I was given very different advice from Emmbee so I think it’s probably best left until you’ve been assessed and given specific advice.
The other advice from Emmbee sounds great. I’d add to that don’t get that arm in the sun too much.
If you have any redness, heat in the arm or pain then you should get seen urgently as that may indicate an infection.
I had quite a wait to see my lymphodema nurse so although its good to get seen asap try not to panic too much.
take care, Elinda x
Hi Elinda,
Apparently gentle stroking is fine to stimulate the lymphatic system which is just under the skin. Massage is a totally different matter and should not be used unless you have had instruction from a specialist. I use both and now only need to wear a sleeve when flying.
E
Thanks to all of you for your advice. I rang my bcn this morning and left a message so I am waiting for her to call back.
The bcn rang back this morning. She cannot see me any sooner than the appointment I have due to all the bank holidays. However she has given me a message to do every day until then.
I’ve been to Breast Care today. My bcn says that I have got Lymphoedema. In fact I actually had it 6 months ago but the bcn that measured me that time got the calculation wrong so didn’t realise it.
I have now been given exercises to do and have had my armpit scanned (all ok there). I have to go back in 3 months. Hopefully it can be kept under control.
Hi CMW
Sorry to hear it is lymphodema, it’s not the news that any of us want to hear.
I first thought I had lymphodema around April last year but my surgeon said no. Finally I saw lymphodema nurse in November and it was, albeit mild. The good news is that it has been quite easy to get it under control in spite of the delay.
I presume you’re having some sort of treatment such as a sleeve? What I would say is don’t hesitate to get an earlier appointment if you need help sooner. I had to try a couple of sleeves before I found the one that suited me. Elinda x
BCN said that she didn’t think I would need a sleeve at the moment, but would keep an eye on it. I suppose if I have problems before my next appointment I can always give breast care a call.