I went to see my BC nurse today as the oedema I have had seems to be getting worse - burning pains, swollen, hot and itchy 20 mths after WLE. She said it was inevitable I would get it as have huge boobs and as I had open wound when having rads this would have made it worse.
She gave me some exercises to do and told me to massage the breast with moisturiser. Now I know this is awful but I have not had the courage to touch it for a while so when I gently rubbed some cream in - for all of 10 seconds - I was horrified to feel that the skin is thick and hard. Of course I also felt a couple of lumps there as well. It is so bad that I cant see that anything I do will be of any use. She said that I would be able to have plastic surgery to rectify it but I cannot bear the thought of more surgery.
I had this shortly after surgery and had a major panic - they try to let it disperse itself and although I still have a fleshy bit the pain has gone. Ask her to check out your lumps but I do have lumpy bitrs in mine which I assume is scar tissue but will be checking out nexct time I see hr.
I had it after a wound infection plus seroma followed after healing by radiotherapy. I was advised by a consultant to massage it twice a day for six months. this helped a bit, it took roughly three years to go down but the skin still gets marks on it on that side if I lie on it, e.g. the indentations of sheets. Bit weird really as the other side skin is normal and elastic
still no-one else is remotely concerned and they didn’t notice when my breast was much larger than the other one
Dear Laine - I used to work in a lymphoedema clinic, and quite often would see ladies who were suffering from breast oedema. It can be really uncomfortable. Swelling caused by the radiotherapy can certainly take a couple of years to settle down. Manual lymphatic drainage can sometimes help, and we taught ladies to do a simple form themselves where they would think about their breast in four quarters, and after stimulating the lymph nodes on the neck and under the unaffected arm would then do a simple massage starting at the outside of the breast and ending at the nipple (always stroking away from the nipple). I wonder if there is a lymphoedema clinic you could be referred to to show you how to do this? Wearing a really supportive bra helps as well. As for the firm texture of the breast, I am sure this must have come as a bit of a shock as it is the first time you have touched yourself much. Sometimes it is a result of the radiotherapy, the scar tissue, or fibrosis caused by the collection of fluid. It’s nothing actually to worry about, but feels strange. You are by no means alone, but I do hope that you will gradually feel more comfortable. Good luck. Sarah
Thank you so much for replying.I think it is fibrosis and its that I am wary about. Hit on the idea last night of using a soft sponge to massage cream in and felt better as I didnt have to touch it with my fingers. Its strange, I was able to lie there wide awake when they were forced to remove the haematoma after it had burst but cannot bear the thought of touching my bare breast. I think part of it is that I expect to find a lump there and like everyone else here I am really frightened of it coming back.
There is a lympho clinic but its far away at the place I had rads and again, I cannot bear the thought of going back there. I am an emotional wuss!
Thank you so much, sometimes I feel so alone and I am sure the BC nurse and the onc have not really seen this before.
I don’t know if my swelling is the same as yours, but I recognise the feelings that you mention!
I too have a very swollen breast on the side that I had WLE last July. Mine is also uncomfortable and I wake up with dents in it! The skin looks very stretched and shiny and I too can feel a hard area underneath. I went for a mammogram in January and was recalled for an ultrasound. They showed me what they could see a huge black mass and asked if I’d had an implant, they had to check with the consultant because the scan was showing an implant and my notes didn’t mention one! It was identified as a huge seroma! It was then drained, 2 large syringe loads later and half of my breast had caved in. I left in a state of shock, as I had a deflated breast with lots of saggy skin. By evening the shape had returned (yes the seroma had refilled the shape!) I saw my consultant and she said I could have it completely drained and ‘dried out’, which would them mean more surgery as I would have to have an implant, or further reconstructive surgery, or live with it swollen and have it periodically drained.
I too don’t like touching it, as it feels lumpy. This is never really over is it?
By the way did you have your treatment at the countess? (I was just guessing by your name)
Hi again Laine - you could try getting onto the Lymphoedema Support Network (google them), if you really can’t face the lymphoedema clinic. They may be able to recommend a manual lymph drainage specialist near you (but you would have to do this privately). Also, Laine, I know it will take time, but do persevere with gradually touching your breast, perhaps just a few seconds to start with and gradually building up. Even if you need to relax, lie in the dark, put some cream on your hands and have a slow explore. Bit like a new lover! Seriously, although this will feel very very strange to start with, you do need to gradually come to accept the new you! Quite apart from feeling “whole” again, knowing how your breasts feel, even your very different than before breast, is the only way that you will notice any changes, and although that terrifies you, you know it makes sense. If you really, really struggle please talk to your breast care nurse about this. I’m just the same at the moment Laine - my operated on breast has just been drained for an infection and now has really solid areas, and dents, and bits that feel sucked in and all sorts, but I’m still glad it’s there, and am just getting to know the new me! Very best of luck. Love Sarah. ps you’ll never be alone with this site - always someone here! xx
hi laine
i am just the same, i visit a clinic at the hospice, i had a wle in november and radiotherapy in january it was fine then about 3 months later my breast went hard and lumpy, quite painful and my skin like orange peel and very hard, i find it quite distressing somedays and to be honest i have it taped at the clinic but it doesnt work neither do my exercises, i rub in bio oil, but anything is worth a try it may just work for you
take care you are not on your own !
love galen
I think these two publications may be of interest to you. They are produced by Breast Cancer Care and may offer some help and advice. These can be either downloaded or ordered through the website.
Sarah - I think the advice you have given is better than any I have received at the hospital! Everything you say is right and I will start to “get to know it” again, I promise. I have been on the site you mention but found a lot was to do with the more common arm lympho? I feel so much better about it now, knowing that others have the same problem. That sounds awful but you know what I mean.
Nicky - wow, another Devagirl, thats great - thought I was the only one from these parts to come on here! Yes, was at the countess and had Ms Redmond and nurse is Emma. Onc is different every time. You are certainly braver than me, if they had said there was a huge black mass of something showing up I would have had a heart attack there and then - feel faint just going up the stairs to the unit…they have offered me recon surgery as it is deformed (gulp) because of the way the haematoma healed - it took 6 months of daily packing by the district nurses - but no way do I want that.
And Galen, you too describe mine exactly. Perhaps co-incidental but I do find these new exercises are making it feel slightly less uncomfortable tho it still looks orrible. I googled oedema and came up with a site showing shocking pix - then realised that was how mine must look and felt sick. Never had the courage even to look at it never mind!
I know there are many people with far worse medical problems than mine but when you feel you are the only one -well, it really upset me.
Hi there - did you know there a compression garments available to help with lymphoedema in the breast? They look like crop tops and are not uncomfortable to wear - I wore them once myself for a a time until that area settled down a bit! I got them through my lymphoedema clinic, but if you are not going down that route I imagine you could order them through a private manual lymph drainage specialist if you decide to see one.
This is my first time posting although I have gained great support from viewing the experiences of others. I too had a WLE 12 months ago and have had chemo, radio and now take tamoxifen. My affected breast is still quite discoloured from the rads I think, and, the scar is very lumpy. Occasionally get stabbing pains in the breast. It’s not really swollen now but as I am due for annual checkup soon can’t help but be worried by all the lumpy bits, and also the fear that it has not gone, or has come back somewhere else! I suppose it’s ony natural to worry but really dreading the consultant’s visit in July. Have obviously been having regular checks with onc. They say they think lumps nothing to worry about, and did experience seromas following surgery which needed draining. Once whilst undergoing ultrasound scan.
Has anyone else experienced this, and what do they do at the surgical follow-up, twelve months on?
Have you had your first mammo yet? At my yearly surgical check up they discussed mammo and gave me a “poke n prod” and just a general chat about how I was feeling.
Oedema would cause swelling - so much so that you would have indentations from your bra. I and many others have suffered from those stabbing pains - been told they are the nerve endings coming back to life and mine have certainly died down. As for lumps, thats my greatest fear, but I think a lot of this is scar tissue etc. If my next mammo comes back clear (hope Im not temting fate) then I intend to have a good feel and in the knowledge that any lumps then are nothing sinister will just keep a look out for something new and unexpected there.
Thanks for that. With first check up since all treatment (except for meds) finished just wondered what to expect. Don’t think I’ve got oedema but defintitely get those stabbing pains and is still a bit sore to touch. Did suffer with rads though. Got third degree burns on neck where they also treated as precaution. The lumpy scar does worry me but it does seem to be just along the scar so hopefully, it is just scar tissue. Like you say, if you keep checking then hopefully, if anything changes you will pick it up.
Like you say check ups are the pits and I think they always will be. Still find it hard to believe that I’ve been through all this. Tried so hard to be positive with everyone and tried to look so ‘normal’ through it all, don’t think a lot of people (maybe even me) realise what I’ve been through, and, all of us on this site.
Anyway, hope your check-up goes ok, keep in touch and let us know.