Lymphedema ...help

Hi , sorry you’re having this issue, it’s horrible when you think you know what you’re dealing with and then something else rears its ugly head. I developed lympheodema in my breast after radiotherapy - it was flagged up at my oncology follow up, 10 weeks after rads finished. I questioned why the breast was bigger than the other, despite having been scooped out and radiated. They weren’t sure and thought I might have an infection, so gave me antibiotics but also, thankfully, a lympheodema referral. 

The lymphoedema nurse was great - she confirmed it and gave advice, as well as a further appointment 6 weeks later. Her advice:

- more supportive bra. I was still wearing post op, front fastening bras which although soft and comfy gave too little support. She said the bra should have ‘full support’ and create a proper cleavage (I’m small so don’t get much cleavage with soft bras!). Broad straps were also recommended. I went to M and S for a proper fitting, which I’d recommend. I also got a decent sports bras and always wear it when doing any exercise class. 

- exercise: she said I should take up Nordic walking and/ or swimming/ aqua aerobics. I love walking so went and did a NW course - I’m still doing NW 2 years later! Something about the arm action (different from regular walking poles) is apparently ideal after breast surgery. I also started swimming but was never that keen and the first lockdown scuppered it, whereas I’ve been able to carry on NW both on Zoom with my local group (indoor sessions of exercises using the poles) and outdoors on my own when no groups are allowed. They also offer 1:1 walks atm but it’s a drive away so I’m waiting till restrictions ease. 

These 2 things - bra and Nordic walking - were so successful that I was discharged from the lympheodema service after my 6 week follow up. I still have mild lympheodema and am always more ‘aware’ of that breast because it’s bigger, is prone to ‘pitting’ eg from the seams on my sports bra, and just feels different. But it’s so much better than it was so I feel it’s ‘under control’.

Sorry for such a long winded response and I’m sure people get fed up with me going on about Nordic walking! But it’s been such a sanity saver as I love walking anyway so it was an easy way to tackle the lympheodema. 

Wishing you well, hope your referral comes through quickly, do let us know how you get on. Love and hugs, HFxx

Sorry to hear you are having a tough time with this. I too have struggled with lymphedema in the breast and it is such a drag. Here is a list of things that have worked form me over the past 2+ years - 

Nicola Rose bras - especially the one with wide straps as narrow straps dig into the shoulders and restrict lymph flow.

Wearing a bra at night.

Walking every morning for an hour - for me, exercise has been the single biggest help with lymphedema.The discomfort is definitely worse if I don't exercise.

Drinking lots of water - 2L a day if poss.

Kinesiotaping works, but my skin can't cope with more than 24 course of it. MLD helps, but only short term.

Find a good lymphedema nurse - I didn't for a long time, and my condition is much worse as a result. The LSN charity has great info on its website.

Lymphedema is a drag after all you have been through, but it is manageable. I wish you well and send you best wishes. xx

Thank you both. The hospital has told me they font know hiw long the wait list is to see the nurse but they are going to post me some information. Xx