Hi , I’ve had lymphodema for 13 years, got it 2 years after my axillary clearance. I find it tricky to manage and feel very alone with it- I always know more than any health related practitioner I come across.
So I was REALLY interested to see this " State of the Art Review" in the British Medical Journal, sent by a doctor friend. Published in July 2025. My summary of it as a non medic is that prevention is improving with new less invasive surgery. But for those of us who already have lymphodema the evidence and quality of research about management is shockingly poor.
On the upside current activity and interest in new treatments is looking at restorative surgery options and even lymphatic system pumps.
In the meanwhile exercise with deep breathing techniques included, and compression sleeves and manual lymphatic drainage are still recommended.
This is all my non medic’s take on a really detailed medical article so do take a look yourself if interested and don’t rely on me! It comes up on google and no paywall.
Take care fellow lymphies, and if you have any spare energy, encourage your team to participate in research. This has been ignored for way too long.
Just thought I’d mention, not enough focus is on radiotherapy as a cause of lymphodema. I had no issues post op, until after radiotherapy. Only 1 lymph node out. Hopefully the current drive towards targeted radiotherapy with less Grays required in total, will help reduce numbers of cases in future.
I’m sorry you have suffered so long with it. There comes a time where you realise its probably going to be a permanent state, and a future, of constant massage and pressure garments, lays ahead to minimise it, though it never goes.
Luck mine is confined to breast area - still annoying though. Been a year since radiotherapy, has times when less, then can flare up more.
Hi @entropy
Lympheodema is a bummer! I developed in my right arm 2 years after a mastectomy with total anx. clearance and 15 sessions of radiotherapy.
I have fantastic support and management from my team at St James’s Hospital, Leeds. They acted fast when I first went to them, and I can always get an appointment see them pretty quickly if I’m having problems.
They did a few week’s worth of pump drainage on me when I had a particularly bad flare up early last year, which worked absolute wonders. That treatment has been around for a long time but is more commonly available. There is quite a wait time depending on need/severeness with bad cases taking priority.
I believe it’s probably a postcode lottery on the management and support that we are given. However, things are developing and improving all the time and, as you say, it is becoming easier to prevent lympheodema starting in the first place.
In my mind it’s the luck of the draw - a bit like how chemo has improved compared to how it was years ago. Thank god I didn’t have to undergo that 20 years ago.
I don’t believe it’s been ignored, more like new awareness with a developing understanding of how to prevent it. IMHO I’d prefer the focus is on making BC detection/treatment better before looking at after effects.
I had bad BC, after an operation I didn’t and after further treatment I have a good chance of it not coming back. Yeah, I have lympheodema as a result 
- I’m alive and well.
Ironic that last night I took my bra off to find I’d developed telangiectasia that wasn’t there in the morning. I should be so lucky! Sometimes its hard to just be greatful to be alive when a new situation knocks you. I probably feel that way as I was only grade 1, stage 1.
I put it in the search on here and got no results which is surprisingly unhelpful. I’ll contact my BCN tomorrow to see if they can advise anything
Oh so sorry to hear that. Do hope you can get sone advice tomorrow.
thanks for that, am waiting on 1st lymphoedema clinic, 6 weeks post smx and node clearance, not even started chemo let alone radiotheray yet. it does seem to be something i need to get to grips with, currently only in chest, underarm and round to shoulder blade, wearing compression bra with 3/4 sleeves that i found online as usual bra straps cut into the swelling. soz, rambling. interested to know more about managing it and what i can do to help myself as there does seem to be quite the wait to see lymphoedema nurse/ clinic
Hi there, sorry to hear about your lymphodema and the wait for an appointment. Cardio exercise is really good, like walking and cycling. As the majority of our lymph system is down the front of the torso breathing deeply during exercise and singing are really good. There are some good videos with exercises, also pdfs from various hospitals. I would avoid carrying very heavy weights for now until it is sorted. Also keep skin moisturised with simple moisturiser. I use double base from the pahrmacist. If I remember anything else I’ll post again - distracted by the grandchildren!