Breast lymphoedema

[Zeppa]

I had three weeks in a German lymph clinic. You can have light (normal) MLD to keep the breast soft, but once it has got hard (the lymph hardens like egg white), there are special movements the therapist uses to break it down. It may be that you are getting the right MLD, but it takes time to get the breast soft again, and should be more than once a week - of course, I don't know if that is possible in the UK.

[Ann_W]

I had my WLE & SNB in march then 15 sessions of radiotherapy in May. About June my operated on breast started to change, the skin got  harder like orange peel all swollen and tighter and then red hot only on the left side of my boob not at the side of the armpit. The onc said it was just damage from the radiotherapy.  I asked if it was lymphoedema and he said no but then it got worse so I saw him again this time he said it was an infection and gave me penicillen. Its now november and it is no better I saw a different onc this time and she said it is probably lymphoedema of the breast. ( notice she said probably) She has made appointment for me at the Alnwick Hospice who have nurses that are trained in this. Whether they can help I will soon find out but I am really annoyed that it has been left so long  cos surely the sooner it is found and treated the better. I have had over 5mths of pain and discomfort. After reading on here about some of you having it for years I dont think I can stand much more. I am more depressed now than when I first found out about the cancer.

Ann

[Guest user]

Hi Girls

I hate to say this but I am nearly 7 years post dx and still having problems. I did have a lot of internal damage due to a surgical error and then had rads on an open wound which didnt help. Sometimes its a lot better, sometimes a lot worse - sometimes I know why, eg I forgot and carried something heavy but sometimes I cannot find a reason. Last week it was particulary painful on the left of the affected breast and down my left side. I had a mammo yesterday and now I am in my usual state of being scared to death of getting those results - ironically for the past few days the pain has gone and I just have a slight "tingly" sensation in the breast although my left side is a bit sore to touch. It never completely goes away and I struggle to get comfy if I lie on that side but I do get frightened when the pain seems to carry on for a few days and fear the worst. x

Laine

[lottie63]

Hi Ladies
Sorry to hear you are still having a painful time , My breast has settled a little , still sligtly tender and pink ( But has been pink since day one ! ) I have increased the massaging and exercise and the reduce in temp seems to be helping 🙂 just waiting for an appointment now for first MLD , I am also now wearing a soft support crop top style bra in bed I will try anything to get my poor booby back to similarity to the other one !! Good luck with the tests / results peacock and Rozita ,
Stay comfy one and all x

[rozita]

Hi all wow peacock your oncologist isn't subtle . I'm still the same very swollen around breast and under arm and breast so painfull to touch saw the specialist eventually yestoday about my cough and explained about lymphodemia and pain in shoulder n arm n numbness he said hel send me for a ct scan but didnt think anything would show and if that was clear il have a camera down throat and if thts clear see a dr in hull about coughing so at least something will be done but he didnt seem to think anything was cancer related. Had my routine mammogram yestoday which was painful but at least another thing checked just hav t wait for results and got my appointment tmorro with the lymphodemia nurse so will see what she says usually the same keep massaging and use a support bra !! So all appointments all at once. Just hope it's not ages for scans etc n fingers crossed. It's hard not to be worried when you can't remember what normal felt like !! Take care ladies how are you all doing ?? Rozita x

[peacock]

Just an update
I saw my Oncologist yesterday - haven't seen him for at least 18 months - he won't tell me what the swelling/hardness is until i've had some tests, just the usual - mammogram, ultrasound and the MRI. I asked him what it could be, he mentioned seroma, hematoma and a couple of other things. I asked "could it be another cancer" he said yes, but he doesn't think so but won't decide on treatment until after all these tests. So I'm waiting for appointments for these tests then I will see him after. Still painful, swollen and looking like an elephant man (on the breast) LOL.


Hope all you ladies are comfortable xx

[rozita]

Hi all awake strange hours as usual just taken my tramadol and paracetamol and gp said add ibuprofen as well so hopefully kick in soon I went to gp yestoday but regular doctor away so swapped to another he was ok I explained had lymphodemia a few years but struggling at the moment with the breast swelling and pain in arm n numbness hand n fingers just woke up only laying on back cos thts th only way now n still lymphodemia arm hand numb and tingly n not lent on wierd Go said straight away carpal tunnel typically my arm was not swollen as had been resting said options were steroid injection. ( i explained were not supposed to have injection in that arm ) or an operation ( well!! ) obit first a wrist splint he said perhaps the other two could be done under the right s circumstances I'm not sure about that. Not even sure about carpal tunnel I thought your fingers wer supposed t turn in ? though ink it seems more like a trapped nerve but worry that something could be pressing. But no mention of a scan so another long wait n route wait for hospital to fit me for a splint there're probably sick of me as I'm trying to sort out why I've been constantly coughing since may 2012 ended up with pleurisy in November and been on tramadol ever since which help with the cough but cant take if I have a few drinks of drive il have a read a out this carpal tunnel and see what I think. Well sorry for th rant hope your all doing ok peacock I hope you get some answera on Monday not good not seeing an Onc I don't would expect to if had a secondary I think maybe youl have to demand lot tie hopefully your treatment will help I had massage In the beginning and was very nice very gentle does help if only you could take those nurses home !! Emn did you get your Seroma sorted ? N ladies with the pain n swelling lets hope yor all doing ok with the heat n if any of finds something that helps wel share rozita x

[peacock]

I saw my GP yesterday who found it strange that as I've been back and forth to the hospital for the last year they hadn't picked up on this breast lymphoedema earlier - well in fact in April I was given anti inflammatories by my surgeon because it was swollen then. There doesn't appear to be any type of taping or special compression bra available here in France so my best option is a stretchy support meant for the abdominal area (I still have one after DIEP recon 2 years ago) - this is available on prescription so I'm going to try with the old one first, will cut it down so it fits the bust area better. I was advised to lose weight so diet and exercise started today.

I'm seeing my Oncologist on Monday after my GP arranged a special appointment - neither of us are very happy that I haven't seen an Onc for 2 years, despite having a second primary cancer a year ago and have now gone 5 years since the first primary cancer.

Rozita I do get a lot numbness and strange sensations in my right arm - it's like it goes dead at times, I've had this since the node clearance in 2008 so am pretty used to it by now so try not to worry too much I think it is a side effect of the nodes being mucked about. I don't have lymphoedema on this side. I've also had a lot of pain and aching in the shoulder since MX and have spent the last 4 years taking tramadol, which has helped but now I'm trying to stop them for a while just to see what it is like now.

Lottie hope you get your MLD appointment soon let me know how the taping goes, it sounds similar to what I am going to try.

Has anyone tried ice (bag of peas works well) on the swelling of the breast? This does seem to be easing the pain a bit but isn't doing anything for the hardness.

Hi to all xx

[lottie63]

Hi Rozita
I get painful shoulder and tingles if I have slept on arm on been resting on it but not just for no reason . I had Lymph clinic today and the nurse has put me forward for some sessions of MLD so I am really pleased about that as breast not getting any better and she agreed, arm is still the same 11% difference to normal arm I was sure it was going to be worse so thats good and she mentioned trying tapeing of the breast whilst I am waiting for MLD appointment as apparanetly there is a bit of a waiting list so I am being allergy tested for the tape !
Hope all Lymph ladies are copeing ok . love to all
x

[rozita]

Awake most of the night with my arm and shoulder aching and feeling numb when I spoke to the lymphodemia nurse she said lymphodemia should not cause numbness and tingling and should see gp But they don't seem to know anything about this has anyone got similar or advice rozita x

[rozita]

Hi all emn Lols right it's a seroma they will need to drain it I had one after auxiliary clearance a feguy ears ago walked like a one siddid body builder haha it is common I was told. Interesting tho did any of you other ladies with breast lymphodemia have Seromas ? Could be linked ?? My breast is very swollen tnite rozita x

[Lols]

Hi emn, I get the cricket ball since wle and ANC in June, been aspirated 3 times will be 4 tomorrow , it's called a seroma and very common, needs aspirating though, it's a pain but does eventually improve and apparently very common, can you phone your bc nurse tomorrow they will be able to advise you? Good luck x

[Guest user]

i wonder if i have lymphoedema. i had a mastectomy and lnc 3 weeks ago. last week i was back in hospital with an infection. this seemed to clear, but 3 days ago I noticed that the top of my arm was swelling and it felt there was a cricket ball under my arm. Anyone got any ideas?

[peacock]

Thanks Zeppa, sorry to hear you've been suffering for so long I've been trying my tens machine which has a massage programme, this doesn't help and it's really sore removing the sticky pads after.

I'm going to look at reflexology to see if that is recommended, anyone tried this?

[Zeppa]

I just want to repeat what I said in another thread: I use a piece of Komprex II foam sheet (can be found in an internet search) that I cut to fit inside my bra and round my side. I don't feel it, but because of the structure it has a slight massaging effect on the breast lymphoedema. I've had this for five years now but it is getting a bit better. Apparently the radiotherapy of the breast did the most to cause it.

[lottie63]

Bedtime is the hardest for me, I used to sleep on the side that I have lumphodema on but I try not to now obviously but find myself automatically rolling onto it in the night, I wear a soft crop bra in bed I find it helps but I so no where you are coming from , Im at lymph clinic on monday and pleased as I know its getting worse and the sleeves I have are too tight im sure as they really accentuate the arm, wrist is small then it seems to bulge out where the cuff stops , hey ho see what they say monday
Hope you are all coping with the heat ladies x

[peacock]

I'm with you Rozita, know where you're coming from x

[rozita]

Hi spoke to my go but they do t seem to kno anything about lymphodemia so spoke to the lymphodemia nurse n she said physio can't massage you cos they r not trained she is they only one and there is only her at York hospital. How ridiculous is that ! I'm due to see her next week but all she will do is talk and advise what she said on the phone which. Was wear a strong sports bra for support and even a softer one in bed. I've tried it and I don't like it I kno thts what she advises but she doesn't kno how uncomfortable it is I usually take my bra off as soon as I get home and go without wherever I can because I find that the most comfortable but she would tell me off if she knew she also said to keep doing the massage but I do I even wake up uncomfortable and find myself massaging my arm but don't find it as easy to massage the breast and trunk just have one heavy lopsided boob thts supposed t b smaller haha if anyone has any advise I would appreciate it rozita x

[peacock]

I'm off to see my GP on Monday to see what she advises, has anyone tried anti inflammatories and do they work as paracetamol isn't doing anything.

After 3 weeks of MLD that also doesn't appear to be working. I am hoping that here (France) there may be some lymphoedema specialist centres, I've found one in Paris which looks good but Paris is a long way from me and I don't fancy another hospital stay during treatment. Might be one closer to home, this I will ask the GP. I'll also see if it's possible to get a compression vest/top/bra as have seen they are available but as they need to be measured to fit I'm not sure if it's available here.

Have a good weekend all

[lottie63]

Hi Peacock
Thanks for the reply to my question I only ask as I am 18 months from dx got lymphedema preety much straight away and it seems no better even with the MLD, sleeve and care I take, I also wear mainly crop style bras I have found some with some support and find they are the only comfortable thing to wear , It helped reading your post Rozita as you are further ahead than I and sorry to hear you still get problems but it makes me panic less,
wishing comfort to all in this heat !

x

[rozita]

Hi peacock I too have some breast lymphodemia I have had mild lymphodemia in arm almost from beginning can't seem to remember not massaging and rubbing! It's hard to forget and get on with louder when your arm and breast feels uncomfortable tight and swollen. At the moment my breast is very swollen on my lumpectomy side and although I had a lump taken out it is not a lot bigger than my good breast but I do feel uncomfortable under the arm. I think that the heat has probably made it worse. But I live in York and we only have one lymphodemia nurse at our hospital and I saw her in the beginning regularly but the last couple of years only about every 4 -6 months and all she does is talk and ask how I'm getting on with it and keep up the massage. I'm wondering whether the gp could offer any physio might b worth asking but they don't seem to know anything about it people keep asking. " Are you ok now" but 3 n half years on no i constantly conscious of my arm and my breast swelling, feeling tight, and aching and how problems with my lungs and chest constantly. Coughing and exhausted. But. Hey I'm here. So thts the main thing just try and look after myself and have as many holidays as possible !! Take care rozita x

[peacock]

Thanks to all for your help.

I had first cancer in right breast in 2008 had chemo/mastectomy with full node clearance/radiotherapy along with Herceptin for a year. Was doing quite well until a 2nd primary was found in the left breast in 2012 - this time I had a lumpectomy (even though I asked for a mastectomy) and sentinal node which was ok, then 5 weeks of radiotherapy and am presently on tamoxifen.

The lymphoedema is in the left breast which was a much smaller cancer, and only the sentinal node was taken.

After the radiotherapy I was left with a hole along the scar which wouldn't heal or close over, it wasn't infected but used to ooze even so, and finally this April I had a repair done to the hole - all these problems with lympho have started since then.

I live in France so treatment might be different here, my physiotherapist is doing MLD 3 times a week but has decided that the swelling isn't getting any better. I'm now trying a bag of peas to give some release and it does seem to help temporarily with the pain, the biggest pain is when I try to move, walk, hoover, etc.

I've given up trying to wear a normal bra, I seem to live in crop tops which have no bra support but are comfortable. Next week when my GP is back from holiday I will go and see her to ask if there is some type of vest top/bra available here which I've seen on websites. The right reconstructed breast is smaller than the left normal breast which doesn't help for wearing a bra.

Thanks again, good luck to everyone and hope you all find some relief soon from these side effects of BC

[lottie63]

Hi Peacock
I too have lymphedema in my breast as well as arm , it can be quite painful/tender my breast gets swollen and red and it feels like I have a golf ball under my arm at times , its a real pain , I am at the moment worrying as have pain near anc scar and it feels lumpier than before , I am due for my next lymph clinic next week so will have a chat with them about it and see what they say , can I ask when did you have op/treatment etc

xx

[netball]

Hi Peacock
I too have Lymphodema in my breast. I go and get my arm measured every 6 weeks or so but found that radiotherapy had made it worse. I have now finished radiotherapy so am hoping it will go down soon. I didn't know you could get it in your breast either as they only mentioned the arm before. I have some massage exercises to do that encourages the other lymph nodes to work harder and hopefully encourage the fluid to drain to my good side. It was working before radiotherapy and now I have finished I will start doing the exercises again. I have started an exercise programme through referral and am hoping that will help too. I have trouble getting any of my clothes to fit and even the bigger bras I purchased from the hospital are too small.
Rhianphil - I will look at the LSN website and may get more info too

[Bethy]

Hi Peacock
I have had Breast Lymphoedema for 4 yrs. I used to wear a corsett that I was given by my MLD specialist, But rarely bother nowadays, I have also done keinesio taping. Flying makes it worse as does coffee and alcohol.
The Haven centre website have a very good area on Lymphoedema and exercises that really do help.
Hope this helps

[Lulu34]

I have it in breast and armpit but its not hard just puffy and bigger than other side and gets marked easily by clothing... Like indents round your ankles from tight socks. Mine doesnt cause any problems and doesnt increase in size and surgeon isnt worried about it so neither am i.

hope you start to get some relief from it Soon and the hardness decreases.

lulu x

[Rhianphil]

If you go on the LSN ( Lymphoedema Support Network) site you'll find many people on their forum who have Lymphoedema of the breast. I'm sure you'll get some answered there.

[peacock]

My surgeon has decided that the swelling/pain/discolour in my breast is now lymphoedema and I'm currently having MLD, I've had a few sessions which don't appear to be helping.

I didn't even know you could get breast lymphoedema. The side of the breast near the armpit is rock hard and extremely uncomfortable, I'm getting very down with suffering this.

Does anyone else have breast lymphoedema? If so what treatment helps and any advice you can offer is appreciated.