I’ve had two lots of surgery, the last of which (second WLE and node clearance) was at the end of December. At the end of January I was in hospital for a week of IV antibiotics for cellulitis. Both wounds split open and the contents of two large seromas leaked out.
They have finally healed but my arm aches a bit and my clothes leave marks on my skin. The BCN says it is too early for treatment and it might settle down but everything I have read says don’t delay treatment.
Hi Moya
It is early days. I had full node clearance and I was still having arm ache a couple of months after surgery. Keep doing the excersise and keep checking with BCN.
Good luck
Chinook
My lymphoedema kicked off 10 weeks after rads but bcn told me it was after effects,gp told me I had mastitis…for me I knew something wasn’t quite right. Had heavy pins and needles and aching arm and trunk was swollen on that side and boob was hard as a rock and orange-peely, I had to stamp foot to get referal but then vidicated as got triple whammy of diagnosis of lymphoedema in breast, arm and trunk. Check out the lymphoedema info leaflets on here and take it further if you feel you have a case. I hate to think how bad mine might have got if I had just left it,early treatment is the key and for me has made a big difference. Good luck .
As well as the support and advice you are receiving here you may find it useful to have a look at the BCC booklet on lymphoedema. If you would like to order a copy or read this on line just use the link below:-
I was referred to our local lymphoedema clinic as my arm was feeling really tired and achy and was being marked by clothes and jewellery.
Am lucky as it turns out as they have said I have very mild symptoms, but it has meant that they have regulary measured me to see whether it gets worse and I was given a sleeve to wear in case of going on flights or just to use if felt like symptoms were flaring up. It really seems to have helped and may have meant that for me its not gone any further.
The main thing is preventative is better then coping with it once it does flare up, so whilst your BCN may be right that you dont need treatment at the moment, a referal to get you checked and to find out how to prevent it, massage etc may be more beneficial in the long term. As my Lymphoedema Nurse says no offence to GPs and some of the BCN but they havent done all the training on this area to fully advise whether it is an issue for you
Hi Moya
I’m six years on now. I’ve mild lymphoedema in my arm. I know I’m having a bad day when all the gaps disappear between my knuckles. I control it with massage and I wear a sleeve if I’m doing something that I know have caused problems before. Make sure you keep up with excersise to keep full movement in the arm, mine still tightens up at times.
Take care
Chinook
hi moya
i understand what your bcn’s saying & you’ve certainly got a lot to recover from, but all the evidence shows really clearly that getting on top of lymphoedema asap gives you the best chance of keeping it manageable
so i’d push for a referral now - the ld nurses can always let you know if you don’t need to see them again
hope it all calms down ok
Thanks so much everyone for your stories - very helpful and confirm that I need to push BCN again for a referral. Don’t really understand her reluctance as I have Bupa cover so it doesn’t affect her budget or anything.
I agree with the others, its probably best to get seen soon so I’d ask to see a lymphodema nurse or clinic. If you’re BCN refuses, say you are very anxious and need to have your mind put at rest. It’s also helpful to be as specific as possible about your symptoms when you talk to her - do you have sensation of tightness in the arm, does it feel worse if you do more with it (such as housework) etc?
But don’t be too paranoid about it all.
I had the symptoms of lymphodema in the April, it was dismissed by the consultant and finally I asked the BCN to refer me to the lymphodema nurse specialist in the November. The thing is that when its mild its often barely perceptible and it’s only through the nurse doing measurements all the way up the arm that a proper check can be done.
I did have mild lymphodema in my left arm but even with the six month delay it was very quickly under control and now my left arm is back to being smaller than my right arm again.
Thanks, Elinda - that really helps. So far everything that could go wrong with my treatment, has gone wrong (no clear margin, needed clearance after SLNB, massive infection, wounds took 6 weeks to heal etc) so I am feeling pretty paranoid.
I understand that feeling. I had loads go wrong too, wounds reopening, terrible seromas for months, blood clots in my arm from chemo - it does get hard not to worry about everything and lose trust in your body and even hard to know when it’s right to worry and not an over reaction.
In my view, the right thing is to get it checked by someone with specialist knowledge. If you’re like me, I sometimes felt awkward asking for help with yet another thing but as I was told, no-one has the vested interested in your health that you do.
I’m sure if your BCN was going through what you are she’d get it checked out by a collague.
Thanks again everyone. In case anyone else is looking for information, there are exercises for lymphoedema on the Haven website which I have been doing. Still trying to get hold of the BCN to get a referral. I am planning a long haul flight in July and am worried that could make the swelling worse. (I think that happened to Vercors).