Any one out there know about lymphoedema in the breast. There's so little info around. It seems important to get on to it quickly but the professionals are telling me it's all okay, it will go on its own, just a little side effect, etc, etc.Should I find a compression bra? And where? They don't come bigger than size 16 as far as I can see.Do I need to massage it? And how? Will it spread? What's going on? Am I supposed to do this all on my own while surrounded by so-called medical professionals who can't come up with anything more original than "go home luv, it will resolve itself"?

Hi therei know this is alarming but without knowing more about your treatment, it's hard to know what has caused what. If you can, see a trained lymphoedema therapist who will be able to give you a more detailed assessment and what is best to do. The fluid may very well disperse naturally, just as you are being advised.

It started a week or so after surgery(lumpectomy) which was 3 months ago, and settled a little until radiation. I continued daily massage until the skin became too damaged by the radiation. The lower half of my breast is affected. Once the skin improved, about 10 days later, I resumed massage as I found it on the internet. Some days it gets quite tight and hard. All nurses, doctors, etc who have seen it are unconcerned or don't have an opinion, or just muse that it's been going on for a long time.Most advice I have garnered via the internet says don't leave it too long or you'll have it forever. It's hard to see how it can resolve itself if the tissue inside has been damaged. But I can't find out what people do about it long term.I will see and lymphoedema clinic person in a few weeks. I hope they have a lot of time because I have a lot of questions.

Hi,I had my lumpectomy fairly recently and am swollen in the breast though I've healed. I'm a public patient and I've seen the breast physio every step of the way. Last week she said the skin had healed or knitted together to the extent that I was to start doing a light massage and she showed me how and got me to try, in an upwards movement towards the lymph nodes in my chest/neck area. She also checks on my exercises which she went through with me before and after surgery. I have to see her again in 2 weeks for a check in. Shouldn't you be having a breast physio helping you along? I also had a right axillary clearance so she is helping me with that too, and keeping an eye on the scarring which hasn't fully healed. (Had it done after the lumpectomy and it's a real pain compared with lumpectomy!) You shouldn't really be having to worry about this...nothing like having to advocate for yourself when you really need someone sorting you out, so to speak. I hope you can get to see a breast physio or whatever is comparable in your state xxBTW before you try and outsource to a specialist, see what the hospital offers. I got ahead of myself and got a GP referral to an expensive dietician and now find that the hospital has an oncology one for me to see free. I was also researching lymphatic massage but am going to ask the breast physio (for my arm). I keep finding stuff I'm worried about is already going to be done by the hospital at no charge.

Good advice - a breast physio or a lymphoedema therapist, essentially you need someone who can help rather than stand by, and chances are you may get this free.

I think probaby its too early to be certain its breast lymphodeama and not surgical and radiation treatment swelling. I had breast lymohodeama post chemo and once all treatment finished some armpit laser improved circulation which meant better movement and better drainage. I wore the following during treatment... a body sized tubigrip from the chemist which you cut fairly large and put over your bra. You could also try a shapewear singlet and no bra. They will provide some extra support / compression which is what mine did. Sometines it made it worse and I took off both that and bra as it can further restrict the flow.Lymphedema massage is just really gentle stroking like patting a cat. The specialist will definitely be able to help in ensuring you are doing it correctly. Do things like slow helicopter arm rotations regularly with deep breathing (like post op breast surgery exercise ) which also assists with drainage. http://www.lymphedemablog.com/2011/10/05/lymphedema-affecting-the-breast-and-trunk/http://www.lymphedemablog.com/2011/01/06/decongestive-and-breathing-exercises-for-lymphedema/Hopefully the links might help you short term but probably you have already seen them. Hope things improve soon. Kath x

Breast Lymphoedema | BCNA Online Network

12 Replies

viking1
Member
9 years ago
Lol that is excellent! Having some good laughs (better than crying!) at family's reaction to my 'problems':
Got my laundry done and put in a basket at foot of stairs to my upstairs studio flat.
Me: I can't carry it up yet as my arm is not strong enough.
Family: Oh.
Me: I can't put my doona cover on with one arm. It's very irritating!
Family: Hmmm.
socoda
Member
9 years ago
https://youtu.be/DRPfudNNd8Y - @viking1 - easy way to out on doona cover!!
Jess_BCNA
Member
9 years ago
Hi there @Bravo, just wanted to jump in to say hello, and to also let you know that BCNA have a fact sheet on Lymphoedema which might be helpful, if you would like to have a look you can read and download the PDF here.
viking1
Member
9 years ago
Is there anything about it on the BCNA pilates DVD? I just got mine so haven't used it yet? The breast physio gave it to me.
viking1
Member
9 years ago
@kezmusc we are twins...I had the same and surgeon said exactly the same to me on Fri ... I have seroma at the moment and it will resolve itself. Drains I am not a fan of! Had mine in for 7 days and it was a bloody nuisance as decompressed twice due to faulty tube. Hard to get comfy with it. I am sooking over my pain which should be classed as irritable discomfort re axillary clearance. I need to put a doona cover on my doona and just the thought is driving me wild! I need to do a lot of jobs before chemo e.g. washing, cleaning room and bathroom, find kitchen sink. Getting on top of things ergh. The radiation does not sound good. They said it might be 5 or 6 weeks, and every day but only for a few minutes. Is it doable? Is the chemo easier? Looking for an upside!
Cowgirl1
Member
9 years ago
Yes Bravo it's very frustrating I have found it very hard to find much for breast more on arms , I had a lumpectomy then radiation my surgeon told me last week not everyone gets this symptom of fluid on your breast. I got quiet depressed as I didn't know why I had this pain 24/7 so I asked my b/c nurse and she put me on to a lady that does lymphatic massage which I was having once a week and it did help,now I go every three weeks. I have this band that runs under my breast and I have a pinkish not a rash more of a couloring which is to do with the fluid but still not enough to drain arrr! I am now going to have lazer treatment end of the month to see how that goes and massage in between, just in the last week or so my breast has swollen up again and gives me pain every now and again which drags me down. I have found it very hard to find things on this, but you must try and get something going soon as you can I think I left mine a bit to late as I didn't know anything like this that could happen.
kezmusc
Member
9 years ago
HI Bravo,
Are you sure its lymphodema and not seroma? I had lumpectomy and lymph node clearance. Ultra sound showed that the breast swelling was Seroma, stayed for about 6 months. Surgeon advised me not to drain it as it just recollects and if you let it subside on its own provides a better cosmetic outcome than constant draining. I have two more radiation treatments left and I think it has nuked the rest of the seroma (LOL) as it appears pretty much gone.The radiation burns are far worse than the surgery and swelling. Uncomfortable...yes but it will go away.
primek
Member
9 years ago
I think probaby its too early to be certain its breast lymphodeama and not surgical and radiation treatment swelling. I had breast lymohodeama post chemo and once all treatment finished some armpit laser improved circulation which meant better movement and better drainage. I wore the following during treatment... a body sized tubigrip from the chemist which you cut fairly large and put over your bra. You could also try a shapewear singlet and no bra. They will provide some extra support / compression which is what mine did. Sometines it made it worse and I took off both that and bra as it can further restrict the flow.

Lymphedema massage is just really gentle stroking like patting a cat. The specialist will definitely be able to help in ensuring you are doing it correctly. Do things like slow helicopter arm rotations regularly with deep breathing (like post op breast surgery exercise ) which also assists with drainage.

http://www.lymphedemablog.com/2011/10/05/lymphedema-affecting-the-breast-and-trunk/

http://www.lymphedemablog.com/2011/01/06/decongestive-and-breathing-exercises-for-lymphedema/

Hopefully the links might help you short term but probably you have already seen them. Hope things improve soon. Kath x
Afraser
Member
9 years ago
Good advice - a breast physio or a lymphoedema therapist, essentially you need someone who can help rather than stand by, and chances are you may get this free.
viking1
Member
9 years ago
Hi,
I had my lumpectomy fairly recently and am swollen in the breast though I've healed. I'm a public patient and I've seen the breast physio every step of the way. Last week she said the skin had healed or knitted together to the extent that I was to start doing a light massage and she showed me how and got me to try, in an upwards movement towards the lymph nodes in my chest/neck area. She also checks on my exercises which she went through with me before and after surgery. I have to see her again in 2 weeks for a check in. Shouldn't you be having a breast physio helping you along? I also had a right axillary clearance so she is helping me with that too, and keeping an eye on the scarring which hasn't fully healed. (Had it done after the lumpectomy and it's a real pain compared with lumpectomy!) You shouldn't really be having to worry about this...nothing like having to advocate for yourself when you really need someone sorting you out, so to speak. I hope you can get to see a breast physio or whatever is comparable in your state xx
BTW before you try and outsource to a specialist, see what the hospital offers. I got ahead of myself and got a GP referral to an expensive dietician and now find that the hospital has an oncology one for me to see free. I was also researching lymphatic massage but am going to ask the breast physio (for my arm). I keep finding stuff I'm worried about is already going to be done by the hospital at no charge.