Im hoping somebody can give me some advice. I have now been told that the “orange peel” and the hardness of my breast (recon one) is lymphodema. The bcn has said to leave it a couple of weeks and if its not got any better than they will refer me to a specialist. Im not really sure what this is, why i have it or how to get rid of it. I have had one prob after another and just burst into tears when she said this was another one, therefore, forgetting to ask questions!
My breast is soo hard that it really really hurts, any advice would be greatly appreciated.
I too have a very swollen breast (after wle x 2, chemo and radiotherapy). I finished treatment almost a year ago and it hasn’t settled yet. I see a lymphoedema nurse (I have a bit of swelling in affected hand) and she thinks the swelling is probably lymphoedema but it may settle eventually. I was just so pleased that the orange-peel skin and swelling wasn’t anything more sinister, but a year on it’s annoying that it still hasn’t settled. Dreading the mammo this month but then the pressure might help move some of the fluid? I really don’t know. As you’ve had recon maybe it’s to do with the surgery?
This awful disease just keeps on giving doesn’t it? But if you see a specialist nurse, at least they’ll be able to confirm the lymphoedema and advise you how to manage it. Hopefully some others will be along soon with their advice.
Hi Cass i also have breast swelling 1 year on after lumpectomy chemo and rads…with all the peau d’orange and whiteness around the nipple. Hard to find a bra that fits well with 1 ok boob and one swollen one. Have referred myself to a private lymphoedema clinic and we are trying manual lymphatic drainage; 3 tratments of 10 done and there MIGHT be a slight improvement hard to say yet. She is also teaching me how to do a simple version of this myself… will let you all know the outcome.
I am year post finishing treatment ( i had wle, lymph clearance chemo and 31 sess rads) and see a lymphodema nurse about once every 3 weeks ( this is through a charity cancer centre) the nurse massages my arm and my scar and boob , it is uncomfortable at the time and sore for a or so afterwards but hardness is improving ( i have had 3 sessions) she has also showen me how to do self massage ( more a stroking that rubbing procedure) and i am sure that is helping. I get very angry that the professionals we deal with who take so long to refer us to a lymphodema specialist, as from all i have read , prevention is the key to managing lymphodema, it never truly goes away. please try and insist to be refered especially if you have pain and it is uncomfortable
Hi I too have lymphodema of the breast. I fifnished rads end of Jan and quite soon after noticed that my boob had a similar appearence to stretch marks all over it and dark spots. My bra then started to dig in quite badly and my boob started to enlarge and became very hard. I had to see my oncologist about some pains and he said i had lymphodema but never suggested any treatment. I had a mri scan which did show alot of fluid on that side but again no treatment was suggested. I was going weekly to my local hospice for a massage, reflexology etc and i remembered that they also had a lymphodema centre so i just mentioned it to one of the nurses and she kindly referred me to them. I now see them twice a week at the mo, one is for an exercise class and the other is for lymph drainage massage. I am then taped up around my boob with some special tape that apparently when i walk, move etc slighly moves the tissues to mimic a massage. This seems to be helping slighty but it is early days and i think i have a long way to go. I also have been showned how to massage myself.
I mentioned that i am having my mammo on tuesday and i have been recommened not to have it on the affected breast as it will damage the tissues, my nurse suggested an ultra sound instead.
Help does seem to be tricky to find but please do ask for help as it really is a painful condition.
thank you to everybody for all your advice. I am getting married in nov and would have liked this cleared up before then. I think i will phone the bcn tomorrow and ask if they can sort something out asap. Its soo uncomfortable because it pushes against the bra!
Just when you think your on the tail end of all treatment and surgery and this comes up and bites you!!!
Please don’t go loopy over my post but am afraid to say that once you have lymphoedema you just don’t get rid of it. I freaked out a bit when I was told that it was an incurable condition…HOWEVER, it IS managable and the earlier you get seen by a lymphodema specialist the better.
It drives me bonkers to hear that it is not taken seriously by some health professionals and there is also a distinct lack of knowledge out there in general too. I was dismissed by my bcn when I had concerns over my sore hard lumpy boob and was told over the telephone that it was just rads damage. A silly old gp I then went to see told me that he wasn’t giving me a referal to lymphoedema specialist as he sais I had mastitis ! I insisted on referal by bcn as I knew something was up and was vindicated in my persistence as told I had lymphoedema to boob,trunk and arm,not what I really wanted to hear but just goes to show that I was right in knowing my own body. Have no idea how bad it would have got if I had just listened to what I was being told and not pursued it.
My lymphoedema nurse says they are trying to get access to patients 6 weeks post surgery so can inform them and take arm measurements so can note in changes and act as soon as there is a problem.This is not something you want to leave as it will just get worse.
I have been taught self massage and go every few months for manual lymphatic drainage. Am afraid am not friends with my compression top which is akin to an instrument of torture and well what can I say about the not so appealing sleeve that I have to wear…hmm can’t really put that down here…
Some days it doesn’t bother me at all and some days I’m in discomfort with it,just something I have to live with and get on with,but I do urge anyone who even slightly suspects that they may have it to get it checked out by a specialist.There are sooo many do’s and don’ts that you have to be aware of and you have to have the knowledge to protect you from making the condition worse.
Good luck and hope all your lumpy bumpy bits get smoothed away.
Thank you sandra, although its not something i wanted to hear, its something that i suspected! I will definately be making myself heard tomorrow with the bcn - its far too easy to be fobbed off with things like this!!!
will let you know how i get on!
I have breast lymphoedema, it also gets bright pink and sore, and i had a bad bout of cellulitus in it last summer, for which I was in hospital for 4 days. However, I have found the kinesio taping really works for me - do ask about it when you see someone.
Hello to you all - i said i would report back. Have been having regular MLD sessions and follow up at home 15+ mins every day using the massage i have been taught. This has brought about a HUGE improvement; or should i say all is now less huge and sore?
The white hard area around nipple was most resistant - so my therapist suggested we used the kinesio taping and this worked very well. She taught my husband how to apply the tape; we go mainly actoss my back and then around the boob though we have also used across the front when the skin needed a rest on my back. She now thinks we have it under control and that i can manage it myself and now i will see her annually so she can keep an eye on things. I am very pleased.
I hope by now Dee that you have also seen an improvement and that by your wedding things will be well under control. Good luck C
Thanks for letting us know how you got on, great that that you had positive results. I had a couple of sessions of mld but my lympho nurse has hurt her arm so she cannot do it for the time being. Unfortunately my skin had a reaction to the tape so I can’t use that. I think I’ve kinda got used to having one boob a couple of cup sizes bigger than the other. The pressure glove works well for the swelling on part of my habd, it’s kept in under control which is great.
Dee, hope you got some help with your lymphoedema and that all is going well for your upcoming wedding. Best of luck with that.
Gina, so you were advised not to have mammogram on affected side - I was told I had to have it and that it was safe, was bl***y uncomfortable though! And I’m still waiting for the result, and that’s weeks ago.
Rhian, I know what you mean about health professionals and waiting for referrals. With lympho it’s so important that it’s caught early in order to keep it under control. I do feel lucky that I have access to a specialist nurse locally.
Hi ladies
Just picked up this thread,I was diagnosed with lymphodema in my right hand and breast in Nov 2008. At first I was referred by one of our local bcn’s to the local lymphodema clinic which is attached to a hospice only 10 mins away. The nurses there are fabulous, and I was given a special glove to wear when my hand became swollen or tired, and shown how to massage the chest (to bring the fluid away from the underarm area) and use strokes around and on the breast as well. I do now find my smaller breast before bc is now my larger breast with the lymphodema and I do find it uncomfortable to lie on at times, but it hasnt stopped me travelling. Since diagnosis we have been to Australia, and this summer to Borneo, so you just need to prepare yourself and visit the clinic before you go. The tape was applied for my recent holiday but I think I was concerned it would make me itch for a long plane journey, so took it off the day before we flew. Since my mammogram last month, they have discovered some rogue cells in my right breast so I am now waiting for a mastectomy in the next couple of weeks so dont really know if the op will make my lymphodema worse or better in the long run - just as I thought things were levelling out!!!
Dee - good luck with your treatment, at least we are still here to moan about it. xxxx