I’m asking this because I didn’t think I had lymphodema - but then discovered I had, and have started treatment for it, which has been really, really good news!
After my mastectomy, I religiously did my arm exercises, but some months after treatment finished, my arm still felt heavy. I thought I would just have to put up with it, but I went to a talk (organised by BCC) on lymphodema and subsequently asked my GP for a referral to a lymphodema clinic.
What a shock! I thought they would send me away with a flea in my ear, but they took my aching arm very seriously, and now I have a sleeve and a glove to wear (when I want to), and a series of exercises to help the lymph drain. Rather than being disappointed at actually having lymphodema diagnosed, I am really glad I went because my arm doesn’t ache any more!
So I thought if there are any ladies out there whose arm is still troubling them post-surgery, do go and get it checked at a lymphodema clinic and don’t be afraid of having a lymphodema diagnosis, as I was. There really is a huge amount they can do and the earlier you tackle it, the better.
My treatment was at St Giles Hospice in Whittington nr Lichfield, and I mention them because the care there is absolutely unparallelled.
It’s really good to hear that your lymphoedema diagnosis and treatment has been so prompt! That augurs well for the future of your arm. No more pain and, because your lymphoedema isn’t bad and, as you say, tackled early, you aren’t wearing a sleeve day in, day out, by the sound of it.
BTW, I do wonder about these post surgery exercises…are they promoted as restoring arm mobility or as a lymphoedema prevention strategy, or both?
I think you have been quite fortunate, as access to qualified nurses (and techniques such as MLD and compression bandaging) in other areas of the UK is not always as quick and easy as it has been for you - I speak from experience!
Anyway - great news - hope your arm continues to improve.
Was your arm not swollen at all? My left arm is still aching and feeling heavy - Ive mentioned it to my doctor who just said treat my arms as normal and just carry on, I asked my BC nurse last week and she said give it another month and then she would send me to physio and to keep doing the excercises. Dont know what else to do! Mines not swollen at all, glad youve got it sorted out, take care
x
Sometimes an arm which aches and feels heavy can (but not always) be a sign that you could be developing lymphoedema, even if there is no visible swelling (I think this is what is coming to be called ‘sub-clinical’ lymphoedema). I think you should insist on an assessment asap if you are concerned.
While you are waiting for an appt, it might be an idea to measure both your arms at a number of points and then repeat the exercise on your ‘at-risk’ arm,say, a week later - at the same time of day. This could provide you with some early (very important) evidence of any changes to your ‘bad’ arm.
Also whilst waiting, I would avoid heavy lifting and repetitiie movements and suggest that you support your arm, especially your elbow, when resting, with a cushion or similar. Don’t sleep on your ‘bad side’ either. But I daresay you’ll have been told all this anyway.
I don’t entirely agree with your GP, by the way; you have to be nice to an ‘at risk’ arm sometimes in order to maximise your chances of keeping it as just that and not getting full-blown lymphoedema.
BessieBoo, I second what Bahons2 says - my arm was not visibly swollen, but when they measured it at the lymphodema clinic, it was 4% bigger than my left - still within normal range for a right-handed person, but I had no idea it was that much bigger.
And I take the point that I am very fortunate in being close enough to the clinic to get there - if we all start asking for better treatment of lymphodema, maybe things will improve for all of us!
Thank you both, Im going to measure it now, no one has told me anything about lymphodema - only know what Ive learned from on here, so thank you again. It wakes me up if I turn over on to that side.
I will call my BC nurse again tomorrow and ask for an appointment. I have signed the petition - we do need more information on this - at least then we will know what to look out for.
Please can we have a link to the lymphodema petition; I did not know there was such a thing but I would like to sign it if it is asking for better awareness and treatment of the condition.
Regarding the post surgery exercises. I asked my lymphodema physio recently. She said they are only to get your range of movement back and not a lymphodema preventative. I think they should be renamed then. As the leaflet I have which is produced by BCC is definitely labelled up Prevention of Lymphodema. When my physio said this I said there seems to be different info being given about lymphodema and all very confusing.
Reading another post I didnt realise there was a difference in “normal” measurments on the right arm (dominant) anyway. My physio did say it would be helpful if the affected arm were measured pre surgery - which I think does happen in some cases.
I am now well over 2 years away from my operation. I had a lot of trouble with the right upper arm and shoulder for about a year but kept getting fobbed off by the medical teams and breast care nurses that ‘it is early days/months yet’ and had to expect discomfort etc.
At about the year mark I managed to get the Oncologost at the clinic (a new one) to listen and I was referrred to the standard physio dept. I had a couple of sessions there and some extra exercises; however I already had almost full mobility, probably due to having had good flexibility before the op. How I got specialist lymphodema therapy was by happenstance and I very much feel it should NOT be that way. My physio was at a meeting where she mentioned my other significant problem (flushes with a frequency you wouldn’t believe) to a colleague who works in day clincs at our local hospice.
After some sessions of acupuncture for the flushes (worked with almost every other of her patients but not for me) she referred me on to the specialist lymphodema nurses who also work in the hospice day clinics.
Although they did not consider I had lymphodema as such they were very serious in teaching me preventative methods of massage and exercise etc. and advised me about preventative measures when travelling (this is for the rest of my life they said) Even more useful is that one of them finally managed to diagnose and relieve the problem in my right shoulder. only 2 sessions of deep massage and tendon manipulation were necessary to put right the problem that I had had for 15 months.
I could not fault the immediate care I had when my cancer was diagnosed but for myself and other people I have talked to, aftercare if you do not have further ‘life-threatening’ problems is very hit and miss.
Glad things worked out well for you Keruval with, eventually, excellent help. I endorse what you say about non life threatening conditions - seems often to be a case of an 'if you can lift your arm above your head, what more do you want? attitude, doesn’t it?
Another thing I’ve learnt from a lymphoedema therapist is that a pair of normal arms will not only be different sizes, they are quite likely to be slightly different lengths, too!
Starfish, thank you for clarifying the issue about these post-op exercises via your physio. I have to admit that I’ve been puzzled (not to say concerned) when people have posted here saying that they’ve developed lymphoedema despite doing ‘the exercises’, as I could not see how these would work as a preventative measure. If these exercises are being marketed as how to avoid lymphoedema, I think they cannot help but be very misleading. (And if they are the same ones I was given four years ago, they were good for restoring arm mobility, but not much else).
