I haven’t posted for a while. Briefly, I had a mastectomy followed by chemo and full axillary lymph node clearance, then radiotherapy. Treatment ended a year ago.
I have now developed lymphoedema in my hand and arm. I’ve been prescribed a compression sleeve and glove that are supposed to be worn all the time. To be honest I haven’t worn them much as they’re so uncomfortable, particularly in this heat and, I’m probably being vain, but they’re not exactly attractive to wear when I go out, so when I do wear them, it’s only at home.
I’m considering LVA surgery and wonderered if any of you have had this. It’s not available on the NHS in England (only Wales) so I would have to pay privately.
If anyone has had this, could you please tell me what your experience of it is and whether it has helped you. Thank you. x
I don’t know about the surgery. I too had a mastectomy, full node clearance (they found 48 of the littler boogers!), chemo and rads. I developed lymphedema about 14 months after all the treatment and I wear a cuff all the time. The only time I don’t is when I am lying on a sunbed!
In the 2.5 years if wearing it, even with sleeveless tops, only 2 people have ever commented - both checkout ladies when shopping. They both said that they hoped my arm would be better soon.
In this weather, the cuff is uncomfortable and was a right pain to get on in a hot gym charging room post-shower this morning.
I am pretty vain and say wear it! No one will care. I wear a couple of big bangles over the cuff - the ones I’ve worn since my 20s. So if anything, that’s going to draw attention to my arm.
If, when the weather cools down, yours are still uncomfortable, have a word with your team - you might need a resizing.
Thanks. I know I should wear them. Today has been unbearably hot and that only increases the swelling. I was just wondering if anyone had found LVA really beneficial and whether it reduced the need for garments. Well done with your positive attitude! Go girl! And the gym - today!! I admire you . I’m in the south east and it’s been 34° x
@Gelbel. Have you had any episodes of cellulitis? I’m terrified of getting any injuries such as cuts, burns, insect bites etc because I know that cellulitis can lead to sepsis. I’m also worried that the lymphoedema will get worse over time. There is a chance that surgery might help with both of those issues. Thanks x
No! I’ve had the odd little cut etc but it’s been fine and they heal in their normal time. I was a bit worried at first. I just go carefully when I am pruning the roses I no longer bother with gloves for washing up (what’s that? Dishwasher all the way) for gardening etc.
The only thing I no longer do is go in the steam room at the gym - way too hot. You mentioned your arm swelled in the heat. Mine has been fine (was in a static caravan at the weekend - I raise you to 38C inside on Saturday evening) the cuff might’ve been a bit uncomfortable in the heat, but my arm hasn’t swelled up. That’s what it’s there for.
The one time I had a load of swelling was when I was having to care for my husband - his mobility was awful and I was helping him to move. Once he was having care provided, the swelling went down - slowly - but it is back to only around 5-8% more than the other side. It had been 24%.
I see my cuff as a preventer rather than a cure, as by the time I’ve had a flare-up - it’s like closing the stable door after the horse has bolted. 99% of the time, my lymphoedema is at the same (low) level.
Thank you. That is very helpful. I don’t have too much trouble wearing the sleeve. It’s the glove that is the worst. It’s inconvenient during the day when I’m doing stuff around the house. Have to wear a Marigold over it to stop it getting wet or dirty and have to take it off when I want to wash my hands.
Oh well, I suppose there are worse things. Think the main reason I’m upset is because I was just starting to get back to some kind of normality. I was feeling better, and my hair was growing, then wham! Lymphoedema happens, and I’ve got it for the rest of my life.
I hadn’t realised that a third of women who have full axillary clearance go on to develop lymphoedema. Thought it was less than that and I’d sort of put it out of my mind, thinking I’d be ok.
I’ll try to be more positive. I know I just have to find ways to cope with it. Take care. x
I got the LVA operation on the NHS at Leeds. Have you spoken to your surgeon to see if they can refer you to a surgeon who can do it? I had to go to a different hospital for the op but it was done under the NHS. I requested it as a preventative operation as I was concerned about lymphoedema and they agreed to do it on this basis. I since ran a 10K and my hand on my operated side did swell during the run but an hour or so after it had completely gone down which I credit to the LVA op so I’m feeling pretty sure it does work. In comparison to the mastectomy and ALNC the LVA op was a doddle so would go for it if you get the chance x
Hi @emmeline1. That’s very interesting. No one has suggested that I could have the surgery under NHS. I didn’t ask specifically for LVA but was told that manual lymphatic drainage, exercises and compression garments were the only options. I will enquire. Did you have several horizontal incisions up the arm or was the surgery to the underarm? I know it is done under local anaesthetic which is a bit worrying. I wouldn’t be able to look! Thanks x
The operation is done under a general, and the surgeon did 1 incision which was in the inside upper arm, about 3 inches long. Due to the ALNC he avoided the underarm area due to scar tissue. I asked specifically for the LVA op when I saw my surgeon and she then referred me to a different hospital and surgeon x
Hi @emmeline1@countrygirl1
I too have lymphoedema in my left arm and hand following full axillary clearance. I was advised that the risk of getting lymphoedema was very low and it was just a bit of swelling! Well, we know that it’s a bit more than just swelling, it’s painful, heavy, tight and at times quite debilitating.
I have looked into LVA surgery and like you @countrygirl1 was under the impression that this isn’t available on the NHS. I’ve had a private consultation with the Oxford Lymphoedema Clinic and am due to go for a scan in September.
I mentioned to the surgeon a couple of weeks ago that I was looking at this surgery, he said it isn’t available on the NHS yet. So it’s interesting to hear from you @emmeline1 you’ve had it done. What was the name of the surgeon you were referred to? Are you able to share? It would be good to have a conversation somehow with you about it.
I am really struggling with my lymphoedema, for me it feels like a real kick in the teeth after everything else I’ve gone through.
The surgeon is Dr Amer Hussain, if you search his name with NHS Leeds you will find him (I have a new phone and can’t master copying and pasting the link ) my surgeon referred me to him on the NHS for the LVA op.
So bad that stuff like this is still a postcode lottery. Hope you get somewhere with it.
Hi there, I too have arm lymphodema after axillary clearance during my first BC expereince 15 years ago. I looked at surgery in Oxford but decided to self manage with Deep Oscillation therapy. Initially I had treatment from a specialist and then bought my own machine. I use it less regularly than is recommendes but always if I feel I need extra help, and before flying, sometimes after a weight lifting session which I love. Thats another story. Check out Deep Oscillation it really works
Also I had 1 episode of cellulitis in 15 years. Got bitten by a horse fly. It was managed v quickly at A and E, no problem. I was in A and E about 45 mins after the bite, got antibiotics
All the best
I thoight you might be interested - there is an article published last week in the British Medical Journal - its basically a massive review of the current situation regarding cancer related lymphodema in UK. If you google its gree to access
. I’m in the south east and it’s been 34° x
I no longer bother with gloves for washing up (what’s that? Dishwasher all the way) for gardening etc.
) my surgeon referred me to him on the NHS for the LVA op.
it IS a real kick in the teeth. Xx