Lymphodema ?

[Anita-B]

Hi ladies I am going into hospital tomorrow for total lymph node clearance, does this mean I will automatically have lymphodema in this arm? Or is it a case of some people do and some don't. Also have been told this is quite painful afterwards what are your experiences? Just want to be prepared thanks

[Jennymary]

Hi Anita, firstly good luck for tomorrow, with my understanding on lymphoedema there is no rhyme or reason why some people develop it and some don't, some develop years after surgery, some soon, I have no Lymph nodes in my right arm developed lymphoedema in both breasts 18/12 after surgery, don't remember having too much pain after my surgery (the nodes were taken during my lumpectomies), but 2 days after surgery the arm became red and hot, urgent visit to Gp, had an infection, antibiotics soon cleared it up, hope this helps xx

[Debster2016]

Hi Anita I am 7 weeks post mx and partial node clearance (levels 1 & 2). I developed cording but no lymphodaema......I understand the same as Jennymary above about who it affects and who it doesn't.

I have got a DVD from The Haven called Haven at Home. It cost £1.50 I think and it has a little 5 or 10 minute presentation which helps explain it a bit more. There are also some exercises which may not necessarily prevent it but I found reassuring just in case.

My cording got very painful during weeks 2 & 3 and I struggled with the exercises (3 times a day) but have persevered and I am pleased to say it is improving so that I am now taking paracetamol 2 times a day instead of 4.

Try not to panic! As there appears to be no rhyme nor reason for either of these conditions developing its hard to address something that hasnt happened yet so try not to worry until you know for sure.

Lots of luck xx 💐

[Hidden]

Good Luck for your surgery tomorrow, hope all goes well & you have no issues following the surgery.

Best Wishes 💐

Mrs N

[Mandywilson]

I had a total removal 7 years ago , and have been fine up to now 😳 Just follow their instructions on exercise & how to massage your arm .. The rest is down to luck 🙄🙄🙄. Good luck 💞

[Lainey66]

Hi There, It is one of those situations some do and some don't. I had very little, if any, pain after my op, mild lymphodema with no pain. Good luck with yours. Lainey66 xx

[NickAl]

Hi Anita. Good luck with the surgery. I have slight lymphoedema 7 months post op. Originally had wide excision lumpectomy followed shortly after by ANC right side and mega wound infection. Radiotherapy finished end of last September. Lymphoedema not really noticeable to look at but arm feels tight, heavy, numb in parts and discomfort bearable mainly. Went to lymphoedema clinic yesterday, what a great bunch of people, and was measured for a sleeve and vest. Must say very disappointed as I have exercised, massaged, creamed blah blah. On return to work was the recipient of some not very nice comments which ordinarily I could possibly cope with but not dealing with at the moment and quite frankly not looking forward to going to work today. Sorry for the early winge ladies but not sure how to deal with this at the moment! Hope everyone has a good day. Alison xx

[Debster2016 in reply to NickAl]

Hey A.uson how awful to hear of unpleasant comments. Is there anyone who can help you deal with this? It's a shame not everyone has the same values. Hope you don't hear any more xx

[Lorraineam]

I had lymph node clearance and didn't develop lymphodema until I had radiotherapy, although the lymphodema is fairly mild, just affecting the lower arm. I didn't have much pain after surgery although I had a mastectomy at the same time as the lymph node clearance. Good luck with your surgery xxx

[C0306]

Hi Anita.

Good luck for your operation Today.

I had lumpectomy last February followed 10 days later by complete lymhnode clearance in my right arm.

The most important thing is to do your exercises that you are given and just gently get back to doing heavy things with that arm.

I have 3 horses and that involves alot of heavy lifting so i tried to use my good arm as much as i possibility could.

It was more inconvenient than painful. I also had my arm elevated with a cushion when i sat down at night and also in bed and i still sometimes have a pillow under that arm at night now.

When you are healed and you can use cream just gently massage that area to help any fluid that is hanging around.

I am lucky so far that i haven't had lymphodemia but i think it a case that after have this operation that we could get it at any time. I am still quite numb under that arm though and thats nearly 1 year ago so as you will be told you can never shave that arm with a razer again so just use an electric one instead.

I did have to go and see my breast care nurse today however as my breast under where my lumpectomy was done and around lympnode scar has been feeling a bit bruised and tight.

She has put it down to scar tissue and radiotherapy damage but nothing to worry about.

Good luck with everything just keep telling yourself you can do it and im sure you will. X

[Lorrie49]

Hello Anita, hope you are recovering from surgery. I had a mastectomy and full node clearance in 2013. Like some of the other ladies I developed lymphoedema after 1 year despite exercises, minding what weight I was lifting and avoiding repetitive lifting. Statistically 1 in 5 will get lymphoedema so 4 will not. Luck of the draw sometimes, I now wear a sleeve and glove. I take it off for work but wear it all other times. Like most bits of this cancer journey you get used to it but i dont like it. Mainly because it singles you out when the rest of you seems normal !! If it does happen you learn to live with it, if it doesnt even better, cross that bridge if you get to it otherwise follow all the advice and hope for the best. Heavy feeling arm sometimes, numb armpit and down the top of my arm and I no longer sweat from that armpit, cut right down on my deodorant bill. Every cloud..... XX

[craftinglady]

Hi, I have Lymph and have never had Cancer--swollen legs for 25years with a doctor telling me I was too fat & to go to the Gym & a Slimming Club & everyone thinking I was a closet eater, not a lot of fun.

So everyone I have come across with an opp even a lady who had a knee replacement has finished up with a form of swelling .

Not a lot of help am I. Good luck with everything.

[Dmhaynes]

No it doesn't and unfortuately there is no ryhme or reason why some people do and some don't. I developed it about 1 year post mastectomy and total lymph node clearance in my arm of the affected side. I have an excellent lymphoedema nurse who gave me exercises and advice on what to do.

I really hope all goes well for you and fingers crossed you will be one of the lucky ones to escape it!! Xx