I have to have full node removal as well as further lumpectomy to achieve clear margins. I’m concerned about lymphoma, do any of you have experience of this.
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I had 10 lymph glands removed .
I did get a little build up but managed it myself.
Never had bloods taken ,blood pressure cuff on the arm .
Had to have a procedure on my arm ,now I have a lot of fluid,so I’m needing a sleeve after 23 yrs .
Good luck hopefully you don’t get
Thank you for responding, sorry to hear you are now having issues.
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I’m living with it. It developed 18 months after my mastectomy, close to 50 node clearance and rads.
I wear a cuff most of the time. It goes up and down - having to be a carer to my husband didn’t help at all.
I now have one specifically for sleeping and had some specific treatment to help reduce it to not far off ‘normal’ levels.
My advice would be that if you have any heavy feeling, any throbbing, any rings feeling tight, anything like that at all you get onto your breast care team PDQ. They should then refer you to a lymphedema specialist. I’m lucky that hear in Leeds I didn’t have to wait very long at all. A week? Can’t remember exactly.
Just try to avoid repetitive things for long-length of times - that includes things like vacuuming and ironing - every cloud!) Do not go humping heavy weights and go careful on exercise that puts pressue on your arm.
If it happens, it happens. In my case, it’s totally livable with even if it swells up and down like a balloon being inflated from time to time.
I don’t cover my cuff up just for the sake of covering it. No one’s made any comments about it if they see it. Although a girl serving me at a till in a supermarket one day did say to me that she hoped my arm got better soon.
Here’s hoping you don’t develop it.
AnGELa x
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Thank you, very helpful with looking out for it and living with it. What surprised me was that it occured 18months after! D x
Hi
I had to have a lymph node clearance following my mastectomy 11 years ago. Fortunately, in all that time I have never developed lymphoedema.
I am still very cautious and never have injections or blood pressure cuffs on the affected arm. I wear gloves for gardening and make sure that I do not allow any cuts, grazes or insect bites to become infected by using antiseptic creams and covering the area quickly. The only small issue I had was when I broke my humerus on my affected arm 5 years ago (not funny!). The fracture was slightly displaced so the orthopaedic consultant considered pinning my arm but decide not to because of the lack of lymph nodes. I’m pleased to report that it healed well without surgery.
I hope that my experience will give you some hope that lymphoedema is not inevitable. And, even better, that I’m alive and really enjoying life 11 years after that devastating diagnosis.
All the best
Wendy
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Hi there,
I had the surgery last July. So far no lymphodema but it could happen anytime and even if it’s not completely preventable there are some things you can do:
Hope you won’t develop one! All the best
Hi
I had a lumpectomy with full node clearance 2 weeks ago .
A drain was inserted during my op
Which remained in place for 8 days as my body continued to produce way over the 50ml of fluids. I was so worried this may have led to something like lymphoma. On Day 8 my fluids dropped naturally so the drain could be removed, I was so relieved. I’ve continued to be active and have felt surprisingly good, Once the dressings were removed I was more comfortable . Like you I am still worried, I’ve even bought myself a long canvas sleeve for my arm whilst gardening just so I can protect myself as best I can.
As someone else has suggested, speak to the BCN’s if you feel any changes/ swelling
Good luck 
I had a node clearance 7 weeks ago. I’m having a third cavity shave in 2 weeks too. After the nodes were removed I was worried about lymphodema. I do have a little swelling in my wrist but only noticeable if I point it out to people. I told the BCN but they said it was too mild and too early to worry. Just kerp your weight down, exercise and massage. Good luck.
Thank you so much for replying I shall do the same with being cautious as you suggest. D
Thank you Wendy that gives me hope. Dx
Thank you I will read through it all and folliw all advise Dx
Thank you Dx
Thank you, I will do my best to reduce risk with the suggestions Dx
Thank you and good luck to you hoping it doesn’t develop further x
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Hi again
Just wondering how you’ve got on since the node clearance? My results from my lumpectomy and sentinel node removal were surprisingly that the three nodes they removed were not clear of cancer so I am now down for a CT next week and then a total node clearance. Bit of a shock (to the surgeon too) as ultrasound was clear. Trying to stay calm and rational but it’s certainly a bit of a downer 
. So many of us going through this though xx
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Hi Toffee, i had a full axillary clearance on my R side and 2 nodes removed on L side in Nov 2023. I’ve been wearing a lymphedema compression sleeve since my surgery - every second day, and then now i wear it maybe 2-3 times a week. I was told exercise was good to get the lymphatic system pumping and waving your arms high above your head and shaking them activates it too. If you listen to podcasts - “Everything you need to know about lymphoedema with Dr Melanie Thomas” on So Now I’ve got Breast Cancer with Dr Liz O’Riordan on Spotify. I was/am really worried about it so I make sure I eat well, exercise and wear my sleeve every so often in an attempt to prevent it but even that may not work so I could still get it in the future. Like one of the others said too, I’m careful of bites/sunburn/cuts etc now too. The lymph is a pretty smart system overall but I hope this helps?
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Hiya
It may be worth asking for a LVA operation which connects a lymphatic channel to a vein. I asked my surgeon for this and she referred me to a plastic surgeon in Leeds who will do it as a preventative measure for me. I don’t think it’s available everywhere but worth an ask.
Hi @emmeline1, Iheard this was only available for a few lucky ones in Wales on the Liz O’Riordan podcast. So its great that you’ve been able to get it in Leeds. Have you got Lymphodema badly? I’m still not sure if I’ve got it. It hasnt got worse. But there is swelling around my left wrist and I can’t see my veins anymore. I hope you get your op soon. Good luck xxx
Hi @anne3. Still not entirely sure if I’m developing lymphodema or not. I have a slightly swollen wrist all the time. It feels tight and I don’t wear my rings anymore. But nobody can tell…it looks pretty similar to the other arm unless you look at the veins by the inner wrist. But I’m keeping it moving and hopefully it will be ok. The alnd is all healed up but I’m having another cavity shave on Tuesday for more cancer cells. Hope you’re well x