Hi, Can anybody tell me what symptoms they have had for breast lymphodema. I have arm lymphodema and think I may now have it in the breast. As I have to wait until the 1st May to see lymphodema nurse I would welcome any infomation. Thanks
Hi Loopyjack
I have oedema in my breast. It is much firmer and larger than the other one and has patches of hard orange peel skin in places. You know how when you used to lie in bed and they both sort of flattened? - well now only one does!
Love Laine
Hi loopyjack,
I developed brest lymphoedema after snb wle chemo and rads. Also i am told the breast still has the effects of the rads which finished sept 08.
It is at times red and achy , hurts if i knock it and has the orange peel look in parts. It also gets creased looking if i lie on that side, which is rare as it is sore, also my bra leaves lines on the skin althiugh it is not tight.
At times it is ok and others it hurts more.I saw bc nurses for exercises to help the flow of lynph away form the 'bad ’ breast which helped, have to remember to do them !!
Also have started back swimming which is suppposed to help.
I awaiting my first mammogram soon hopefully , but do not relish being squashed!!
Hope this is of help
Take Care
Sarah66 xx
Hi I have it in my breast too. The seams on my bra make really big indents on the skin, it is very pink and lumpy and it is at its worst first thing in the morning. I moisturise after my morning shower and gently massage it which seems to help. I have now been referred to a special clinic at the hospice where they can show me how to massage it properly.
Louise 
I have just finished my chemotherapy sessions today, and have not yet started on the rads, but already have lymphoedema in my breast according to the breast surgeon who I saw on Monday. He was not much help and did not offer me any suggestions for helping the problem !!
My breast is swollen and looks orange peely too, I get a hard lump under my axillary scar which goes if I gently massage it in the shower…only to return later on in the day. I also get a line of hard tissue in my breast , where the seam in my bra goes , which again goes if I massage it gently.
Does anyone know if lymphoedema clinics are common ? I have looked on the web and found some massage techniques there , but have had no advice from the doctors or nurses about it.
I am really panicking about the effect of the rads on it.
Hugs,
Jill
My arm seems ok but what you ladies are saying about the seam in the bra leaving a line or ridge is what I have had too since the weekend. I am going in to get it looked at today although mine is at its best in the morning and worsens from when I get up. Looks swollen too and a bit orange peely. I will try gentle massage but am seeing BCN today and will ask her too. When I spoke to her yesterday she said it was normal but it has only started in the last few days so it doesnt seem normal to me. Hope you ladies find some help for yours - any tips welcome. Best Wishes. LooLoo x x
Hi all
Re: your question about lymphoedema clinics, Jill.
The anwer is that most health authorities seem to have one of some sort(a tick in the box, so to speak), but that they are often part-time, underfunded and understaffed. It can also be difficult to get a referral to one.
None of which means you shouldn’t be assessed and treated properly. So use whoever is the most pro-active of your healthcare professionals to get a referral asap (the waiting time can also be long).
Very few medical staff take an interest in lymphoedema, so your surgeon’s reaction is, sadly, fairly typical.
Have also sent you a pm about where to find more info’. If anyone else would like it too, feel free to pm me anytime.
X
S
Thank you for pm Bahons2 I have replied and sent my email addy this morning .
I shall see who I can get to get me a referral ,maybe my trials nurse ( I am on Tact 2 trial ) or even the oncologist might do it . My BCN doesn’t seem to be much help.
Just some feeling of being helped would be good, as I get pain in my shoulder and breast. I am hoping that now the Chemo is over it might improve…I wish !!!
Have to go for Rads measuring up next Friday…which will be fun.
Hugs, Jill
Info’ on it’s way to you, Jill.
X
S
hi everyone - think I might be joining the ranks as I have similar things with my boob - eg orange peely thickness of skin, bra and hickman line leave marks/dents etc and feels odd…does anyone have colour changed in nipple area ie going paler, or rather areola around nipple…?? mary x
I’ve got lymphoedema in my affected breast - pinker and more swollen than the other breast, marks left by bra, intermittently quite painful etc. I had a course of manual lympatic drainage which helped just a little bit.
Yes kittenkat, my nipple and areola is quite a bit paler on that breast. I asked the breast surgeon about the colour and he said it may get even paler.
Take care everyone
Anthi x
Hi,
Was reading this and it struck a cord with me as I have horrendous dents in my breast from bras and tops and much harder recon with orange peely skin on one side. What really struck me was your comment kittenkat about skin colour changes.
Can I ask whether your colour change on your areola is generalised or localised?
I had a lighter, almost circular area on my areola. The tumour was under that lighter area and thats what alerted me to things changing. 99% of my areola was removed during the mx however in recent months I have noticed new areas of lightening but this time in the skin of my recon, one almost circular the others more like almond shapes.
Sorry to digress or maybe I’m not and this is a lymphodema symptom?
Hi Ladies,
Thought I’d join in too as I have a lot of the same issues!
Swelling, indentations, pigment changes etc.
Haven’t been on the boards for awhile as I’ve been away. I didn’t really like to go off on several long haul flights with the swelling, but it is now no better, no worse than a month ago. My BC nurse is disinterested and I’ve been told elsewhere that lymphoedema would start in one’s extremities (ie fingers, hands) so “It can’t be lymphoedema.”…… Is that correct???
Anyway, I was a bit nervous as I had my 6 month post op mammogram last week. I managed both scans with the minimum compression thanks to a very sympathetic technician. I’ll be seeing my surgeon for the results soon, so I’m hoping for some info from him. My segmental mast. involved some internal stitching. Could that cause a blockage in lymph flow? Or could it be a delayed reaction to radiotherapy? I’ll let you know if I get any answers!
LXXX
Hi Ostrich - spose its generalised really, when I prod it it goes pale…?? I’m going to try and contact a different bcn today in the hospt where I’m having chemo instead of the one I had surgery in - she doesn’t actually cover our area as I was fitted in there quicker for surgery - to see if she’s any better or if she’ll look at it for me or mention a lymphodema clinic…mary x
Hi yes Linda - keep us posted…mary x
Thanks for that Kittenkat. My paler skin areas are permanently there as it was with the cancer. Will mention it when I go and see the Onc next week. More worries…
Hello everyone
Just to report that I have seen a specialised lymphodema nurse today. She took measurements all up my arms at 4cm intervals and said I did not have it in my arms only in my breast. She said it can be caused by surgery and particularly radiotherapy.
I have a new daily routine: Shower, dont get really hot water on my breast, use one of those body puff things to clear the fluid towards the other breast, using warm water. Only use Simple soap, no perfumes etc that side. No razors (as we knew). Get dried. Start massage a few inches from top of arm using slow, gentle upward strokes then move to a bit lower on the arm and continue upoward strokes. After massage, moisturise. then there is some massage of the neck nodes (think you need to be shown this in person), some deep breathing and some exercises such as flexing the hand and clenching the fist, ten reps each. In the evening don’t need another shower but do all the rest.
Anyway I am not saying that everyone would benefit from my individual routine but what I AM saying is that you can do a few things while you are waiting to see a specialist such as avoid hot water, avoid scented soap, use aqueous cream, gently stroke along affected skin towards the sternum and then to the other breast. She said imagine a plughole under your good arm (!)
Also she said no bouts of ironing (heh heh) and try not to carry anything on bad sied and to wear gloves when gardening, I have heard some of these things before (see the Fix Biz thread)
I got my BCN to refer me. The doc wasnt concerned but the BCN took it more seriously.
Louise
Hi all, esp Lomalinda - I think the bottom line is; if the lymph nodes which drain your breast tissue are removed, damaged or irradiated, you can end up with lymphoedema of the breast/trunk.
You can get lymphoedema anywhere your lymphatic system has been compromised. And the lymphatic system extends throughout our bodies, not just arms and legs.
So anyone who says you can only get it in arms or legs is talking ******ks.
And asking an onc or surgeon about lymphoedema is a bit like asking an interior designer about your blocked drains - it’ll be a bit beneath them.
w x 3 dot stepup-speakout dot org has a good section on breast/trunk lymphoedema and why it seems to be more common.
X to all
S
will check it out tomorrow…cheers, mary x
Hi Bahons!
You are the lymphodema champion! God bless you for almost singularly fighting a cause!
I am still Ostriching my lymphodema cos its either too hard to get treatment or I don’t want to have anything more to do with hospitals!!!
I know its there though as I suffer every day either swelling or pain from lifting *sigh*. Its never something they ever discussedwith me, even though I mentioned my job (luckily its not interefered with work so far) and I would have no idea about lymphodema if it weren’t for you.
So… on behalf of myself (in denial as I am) I just wanted to say a massive THANKS for all the support you have offered and/or given since I have known you.
xxx