im sorry for being so niave, but can anyone tell me what are the symptoms of lymphoedema, i was operated on the right side and my right arm aches and feels heavy cant really describe it any other way
Anna
Hi Anna
I’m no expert but have recently been diagnosed with lymphoedema, four years post surgery, so can speak from experience.
The main symptom is swelling. I have it around my elbow, in my chest wall and breast. My breast cancer nurse measured the circumference of both of my arms when I went to see her because I thought my left arm was swollen. She told me that lymphoedema is diagnosed if the difference between the two arms is at least 2cm.
I’m not sure how recently you were operated on but it is quite normal to have a sore/aching arm for a while after surgery which is why you need to do your exercises. You may also get some swelling due to seroma which can be drained.
If you are worried, I would talk to your breast cancer nurse or doc.
I hope that is some help to you. Good luck.
Hattie
I’m not sure about the aching - I expect someone else can help you. But I know my arm ached on and off for a long time after surgery (perhaps up to a year). I have lymphoedema in my hand (but not my arm) and this was obvious to me as it became swollen.
I developed lymphoedema about 2 months after i finished treatment. I probably had it for a few weeks before i realised. My first symptoms were aching in my arm which got worse, I then noticed my arm had swollen. The aching and the swelling got worse over several weeks to the point at which i couldn’t raise my arm above elbow height.
I think the pain is the lymph trying to find its way through the tissue and gradually subsided. The swelling went down slightly but never disappeared. I had to wait nearly 2 months to be seen by the lymphoedema clinic by which time it was passed the worst. I’ve been offered no treatment but now wear a compression sleeve. I would suggest you got it looked at asap as i think mine may not have got so bad if i’d been able to get a sleeve earlier.
Hi annamarie - your not ‘naive’ at all. Info on lymphoedema is difficult to find and even these days some medical staff seem to operate on a ‘cross their fingers and hope’ basis that you don’t get it and then only, sometimes reluctantly, do something to address the problem. Horse - stable door - bolted.
The dull ache and heaviness sound familar! I agree with what everyone on here has said and would add that you seek help/advice/a referral asap. If it is lymphoedema, early intervention can be a great help, so don’t be fobbed off with ‘wait and see’.
Let us know how you get on!
X
S
Hi everyone,
I developed lymphoedema soon after rad. treatment last Nov/Dec, altho. in its mild form, left arm, radiographer told me signs are; swelling, heavyness and where the lymphoedema is centered there is usually a “hot” feeling. mine is centred in my elbow. Was told not to carry anything heavy with effected arm, not to wear shoulder bag on left side. always use sunlocker when in the sun - if we ever get any - or on holiday, always keep skin of effected arm moisturised and clean, do the excercises and to wear support sleeve most of the time, important when driving, working, gardening etc. and to wear gloves when washing up and gardening. Do NOT under any circumstances have your blood pressure taken or blood taken or injections of any kind on the effected arm. I carry a small tubve of Savlon antiseptic cream with me just case of any scratches etc. I feel I have been treated really well and check ups every two months, last check up 2 weeks ago, have managed to reduce swelling by 8%. Can now leave sleeve off more often.
Also told that the weakness and aching feeling were probably due to nerve damaged rather than lymphoedema, I do have some numbness in the upper arm. I know there seems more “do not’s” than “do’s” but fact is once you have it it is not cureable, just have to do what you can to control it and not aggrivate condition too much. could be nice if there was more research tho and if somehting could be done about those sleeves.
Sorry if I’ve gone on a bit, but hope some this info may be of use to others.
Don’t let the “B***” get you down.
NannaCooking
Hi Anna
We have an information page on this website about lymphoedema signs and symptoms which you may find helpful:
breastcancercare.org.uk/content.php?page_id=1009
If you remain concerned please call our helpline for further information and support on 0808 800 6000 Mon-Fri 9am-5pm and Sat 9am-2pm.
Best wishes
Lucy
Hi all
Had original rads 1996 after lumpectomy and chemo. Arm was numb for 4-5 years but gradually got some feeling back after that.
Was told lymphodema can develop at any time. During my chemo, mastectomy, more chemo last year, i noticed a dull ache and getting stiffer. Felt too ill with treatment to look into it, but after second mastectomy, was measured and fitted with sleeve.
I wear it every day, during work, housework etc. and I guess it has made a difference. Will find out on my next check in October.
This can develop at any time, so please ladies keep excercising, moisterising and checking for swelling, it can be controlled.
I also developed lymphoedema 2 years ago (13 years after my initial diagnosis) do Dozz51 is right - it can develop at any time. Mine came about because I was pretty ill at the time and they took my blood pressure on my ‘wrong’ arm and I wasn’t aware that they had (and that was the chemo clinic nurse!).
My lymphoedema is called as moderate but I tend not to wear my sleeve in the summer as I find it too uncomfortable and it seems pretty good at the moment.
I think the Haven do courses on lymphoedema but I have a feeling it might be in the prevention of it rather than living with it.
Hi Lucy
Thanks for the info. will certainly check out the website. I think the more inof. we have about this condition the better we can control it. I do feel a bit cheated tho, having gone thru the op for bc and the trauma that goes with it - fingers crossed, but not 12months down the road yet - beaten it, only to end up with a related condition for the rest of my life, doesn’t seem fair somehow!!
Nanna
Hi Nanna - couldn’t agree with you more - op, chemo, rads and first prize for getting through all that is a fat arm for the rest of your life.
Roll on the day when lymphoedema is tackled pro-actively. What could be more useful, and cheaper(?) than a trained nurse quickly taking some baseline measurements of both arms BEFORE surgery. A five minute job, which could provide a really early indication of a potential problem.
Also, as I’ve mentioned before here, issuing everyone at risk with a sleeve (OTS are not expensive) to wear prophylactically when flying, shopping, gardening, doing housework, would, in my humble opinion, do much to avoid so much of the unncessary suffering that lymphoedema causes.
Unfortunately, there aren’t even any NICE guidelines for the treatment and mangement of lymphoedema at the moment, which means that healthcare providers are able to provide little or no care or treatment for sufferers with no fear of reprisals.
(Rant over!)
X to all
S
I so agree with you Bahons. if I’d known then what I know now I would have insisted on being given a sleeve.Lymphoedema starts before you notice it. I didn’t notice mine until it had become quite painful. I was checked by surgeon who agreed it was lymphoedema and said it would get better, suggesting i bandaged my arm with a crepe bandage - which resulted in forcing it into my hand! It took me nearly 2 months to be seen at the lymphoedema clinic and they would give me no advice as i hadn’t been assessed!
If I’d been given a sleeve to wear straight away, it wouldn’t have progressed so quickly and become irreversible.
Hi Kelley - what rotten luck having a surgeon who told you it would get better - and a flippin’ crepe bandage of all things!
The ignorance of this condition is gobsmacking - not to mention dangerous (cellulitis, fibrosis). I’ve had it a long time now (12 years) and I’m sorry to say that I’ve hardly met anyone in the NHS who knows much about it, or is fully trained in treating it, or who keeps abreast of new research and developments (pitifully few, I’m afraid).
How is your arm? Has anyone offered you a course of compression bandaging or MLD to try to reduce your arm a bit?
X
S
My surgeon suggested some MLD which i had to pay for and my therapist told me about where she trained in Austria. I went there last year and this year and got treatment. It was very good and very reasonable last year. Unfortunately, the change in the currency earlier in the year made it a lot more expensive. But I may well try to go next year if i can afford it. It’s a great experience having MLD and bandaging twice a day and i found it a very relaxing, healthy holiday.
The lymphoedema person I see here is not very good. She seems to dismiss my condition saying she’s seen “a lot worse” and claims that it’s under control. She doesn’t accept that it is under control because of the effort and money I have spent on it!
Sorry but at my first meeting with her she claimed from 2 metres away that my lymphoedema didn’t look too bad!
what is it with these so called lymphodemia nurses ,i have the same problem with mine thats when i get an appointment ,sadly lacking here im afraid ,lymphodemia seems to be the forgotten part of all the treatments ,and suprisingly a larger number of us are getting it . i myself havnt seen anyone about mine for 4 mnths now .despite ringing them and asking for an appointment to be sent i still havnt seen anyone .my arm aches all the time at the moment and i have swelling around my elbow so i know that somthing is going on .my gp dosnt know much about this condition ,i dont think many do .saw the oncologist on monday . and she thinks ive got worse in a few weeks .dont really know just what to do at the moment ,cant afford to pay for mld myself .lynn
Yep - couldn’t agree with your experiences more, both.
I’ve had some very dispiriting experiences with healthcare ‘professionals’. My (otherwise excellent, I have to say) surgeon’s positive ‘spin’ on my swollen arm was that he had had patients with much worse lymphoedema than mine!
When I eventually managed to get a referral to my lymphoedema clinic (the bcn kept saying ‘they’re very busy, you know, having you tried taking paracetamol?’ - well, I wasn’t expecting them to be sitting around twiddling their thumbs, was, I?) it was being run by an excellent highly trained, knowledgeable lymphoedema nurse with wonderful people skills. Bliss. Unfortunately, she left to work in the private sector and the clinic was left in charge of her rather less skilled and less sympathetic staff. The whole atmosphere changed. If my measurements had increased, it was suggested that I had put on weight (ie, it was my fault), and each visit included a lecture on how lucky we were to have them and yes, how there were others much worse off than we were!
I cannot for the life of me think of another area of healthcare where this kind of attitude would be allowed to prevail.
Like you, Kelley, my lymphoedema is under control through my own efforts and financial sacrifice but there are many here who can’t afford the intensive treatment that they need to reduce their lymphoedema to a level where they can manage it with the minimum of help and which would transform their quality of life. Something that you think would be the goal of lymphoedema nurses everywhere, if only because it would result in fewer long term problems (and reduced cost to the NHS). But all that some people seem to get is measurements and more measurements, an often badly fitting sleeve and a photocopy of some boring exercises. I really grieve for people with lymphoedema who are short-changed like this, it makes me so angry. We submit to all this surgery and radiotherpay in good faith, but when lymphoedema appears, no-one wants to know.
Lynn, can you get your oncologist to push for some treatment for your lymphoedema? You never know! Thinking of you.
X
S