I had a lumpectomy and full node clearance 3 years ago - all 22 nodes removed and clear. Surgeon said she was 99% certain they were clear from ultrasound but instead of a SNB she took them all out anyway - not sure why??!
At Christmas I noticed my left arm was slightly swollen at the top and went to my GP who says I have mild lymphoedema and has referred me to a clinic.
My arm measure 1.5 cm more than my right one - but I am confused everyone seems to talk in percentages - does anyone know what percentage that is?
Also I can’t believe I have it after 3 years - WHY???
ANy lymphoedema ladies out there who can tell me about percentages and if 1.5cm is bad etc etc?
Hi Alise, I understand lymphodema can develope anytime after surgery. Mine started with hand swelling, just after surgery in 2006, I also have some breast lymphodema.
I was given advice on skin care massage and a pressure sleeve to wear while on rads treatment, also on a long haul flight. Just been discharged from the lympho clinic as it is no better, no worse. My unaffected arm is 7% bigger than my affected arm, explain that one I do get aching around my elbow area, and a feeling of heaviness, so I will continue to take care. sorry I cant be more helpful
Hope all goes well for you
Marge
Hi Alise - so sorry to hear about the lymphoedema, but welcome to the lymphoedema board - from a fellow sufferer.
As far as I know Marge is right - it is my undersanding too that lymphoedema can develop at any time in people whose lymphatic systems have been compromised. I think that Xmas is also a bad time for triggering lymphoedema - heaving big turkeys in and out of a hot oven, extra shopping, etc
3 years is round about the average time to develop lymphoedema, unfortunately. It seems that some people’s lymphatic systems fail after coping OK for a while and I would imagine that yours is one of these.
I think the percentage refers to how much bigger your affected arm is than your unaffected - and I think it is still measured in terms of volume. So the smaller the percentage, the smaller the swelling. I think most people’s dominant arms are usually bigger than the other.
Difficult to say why your surgeon took out all those nodes instead of doing an SNB (one hopes she had a VERY good reason) - if some of them could experience the long term effects of lymph node surgery themselves, they might think differently about some of their procedures.
It is brilliant that your GP has referred you to a lymphoedema clinic and not given you diuretics and told you to live with it! Don’t wait too long for an appointment there - pester if you don’t hear something soon - the quicker you get some help the better, because lymphoedema doesn’t improve on its own.
Bahons2 is right about the percentage. They take measurements on both arms at the same point on each arm (you get a lovely line of dots up each arm from marker pen which does wash off!) and they then press alot of buttons on a calculator which is i think them working out the volume and then they tell you how much bigger one arm is to other.
Your GP has been excellent refering you straight away, but do pester them if you dont hear soon the quicker you get started the better. I didn’t and it took over 4 months for my first appointment. By then my arm had increased noticeably.
I thought I’d mention BCC have a booklet called ‘Living with with lymphoedema’ which you may find useful to read. It can be found by following the link below:_
I have been told it is only mild and given exercises to try and move the fluid which IO have to do for a month. If this doesn’t work I have to go back for some kind of taping??
Not sure of % yet - nurse is going to work it out and then let me know on Monday.
Has anyone else been given these exercises and do they work?!
I have mild lymphoedema, have the exercises and they do help but I personally can’t do too many as they can make it worse and give more swelling - it’s finding the balance as my nurse said.
I also have the taping - it’s brill !!! It’s known as kinesio taping and lifts the skin so the fluid can flow better (or something like that - chemo brain reduces the memory!) I have been having it since April as the area above my collarbone swells, plus a bit of the chest wall and under my arm. Originally I looked like the hunchback of notre dame my left shoulder was so high and I had no gap between there and neck. The tape looks like elastoplast but is cut in long strips and you take it off after about 4-5 days. Physio does mine and pattern varies according to where swelling is most - I have it from the top of the scar ( I had a mx no recon and full anc), over shoulder and down back to hip area and another bit branches off from under arm to hip area. I’m a textbook case for the results according to physio and if I go 2 weeks without it, even doing exercises and gentle massage, I’m swollen and stiff again. Usually have it every week to 10 days. Just have to be careful with taking it off - last lot stuck so well I’ve had to have a week without as my skin was a bit red from the taking off. Roll on Weds for next lot !
Oh and some people can see part of my taping as it’s by my neck and they think I’ve tried to slit my throat or something !!!
Think it can be done on arm but they would have to have long piece going up arm towards shoulder, then down edge of back to hip. As far as I’m aware it can be done on any affected bits of the body as long as it goes down to an ‘outlet’ in the lymph system.
Chemo brain allowing, I’ll ask physio on Weds morning and report back.
My arm had been reducing in size, from 33% to 25, soooo chuffed, then had Cellulitis which has basically cancelled this reduction out, really p****d off. My clinic don’t do MLD unless its more than 40%, as I’ve said before horse and bolted come to mind… Anyway will be interested in what your physio says, I’m due back in couple of weeks for new sleeves so could bring this up as an option.
Well chemo brain nearly got the better of me but I remembered to ask my physio and now have 2 bits of tape going down the upper half of my arm as well as the bits across my shoulder, neck and down my back . As long as you don’t go across 2 quadrants, it’s ok and any part of your body can be taped - attractive proposition when you’ve put on 2.5 stone !!!
I’ll report back re the arm after I’ve removed the tape on Sunday. My arm just feels (and is !!) fat rather than too much lymphoedema but it is a matter of horse and bolted like you said. At least I’ve got a great physio.
I do get aching around my elbow area, and a feeling of heaviness, so I will continue to take care. sorry I cant be more helpful