Hi. I wasn’t offered LVA when I had surgery or when I developed lymphoedema a year later. I was just given compression garments and 6 sessions of manual lymphatic drainage at a local centre. Some NHS trusts do offer the surgery alongside full axillary clearance but I think it’s rare. Some also offer LVA if lymphoedema develops later, but again, it’s rare. I believe it is offered in Wales. I did my own research and found the Oxford Lymphoedema Centre. There is a website to get more information. Yes, it is expensive but it may differ depending on what is needed so you’d need to contact them for a price if you do ever need it. It is best to contact them early if you do develop lymphoedema as surgery is more successful the earlier it’s caught. Having said that, you may never develop it, or you may be happy wearing garments and performing self massage, which helps a little. There are also machines that you can buy to help. Try not to worry but just be aware of any swelling at any stage later. Mine started in my fingers when I realised my ring was tight.
Thank you so much for your reply. Yes, am going to measure my arm before surgery to get a benchmark and then track once healed.
Got the name slightly wrong. It’s the Oxford Lymphoedema Practice (OLP)
Hiya, you’re welcome. I asked for it specifically. Guys and Thomas do it as standard so I basically said they do it so can I have it (if you search LVA guys and Thomas you should find the leaflet). I honestly think it’s stopped me from getting lymphoedema. I go running and quite a few times when running my operated side - hand - will swell up but due to the op it always goes down. So I’m very happy they did it as a preventative op, I explained that I’m relatively young (early 40s) and didn’t want to potentially get another health issue from having the full clearance. LVA with axillary lymph node clearance - Overview | Guy's and St Thomas' NHS Foundation Trust
Just be aware that you might not get swelling (at first). Mine started as a heavy feeling in my arm that my Lymphoedema team confirmed was lymphoedema with all the calibration they do to measure.
Hi @Gelbel -thanks for the information. How long after surgery did you have the heavy feeling and was it persistent or intermittent? xx
Hiya @jenniferguess
It was just about a year after radiotherapy (I had a right side mastectomy with total node removal then chemo then rads). It was persistent and with a bit of the weird feeling you get when pins and needles subside. Subtle but they were new feelings in my right arm.
Called my BCN team and had an appointment with the Lymphoedema team within 2 weeks. xx
@Gelbel - thanks again for sharing this info. I am just 7 weeks after surgery and sometimes feel a slight heaviness in the affected arm if I have walked a few miles and then it goes away. I also still have some swelling on the side of the breast that had the cancer so I guess still have some mending to do. I will keep an eye out for persistent feeling now, though. I am also considering signing up for the Oxford clinic mentioned above as they have a programme for monitoring over a 3-year period. Thanks again xx
I realize this is from a while ago, but I was wondering if you’ve looked into custom-made compression garments. They might be more comfortable, especially in hot weather. Also, have you tried lymphatic drainage massages? They can be really helpful for managing lymphoedema.
Thanks. I went ahead and had the LVA surgery last year with excellent results. The swelling is very minimal now and hardly noticeable so I don’t have to wear garments. I did try the lymphatic massage before I had surgery, but I didn’t find that it helped.