Lymphodema in breast only What can I do to relieve it?

I have lymphoedema in left breast following cancer op. and radiation 2 years ago. G.P. says nothing can be done, if it becomes unbearable I should have a mascectomy. Breast is hot to touch, itchy, uncomfortable or painful most of the time, he describes the skin as peau d'orange, as it was badly burned by radiation. Surely there is something that can be done?

26 Replies

  • It sounds like you have been through a lot, I'm sorry to hear your GP isnt being too helpful with this

    Yes, something can definitely be done about it - your GP should recommend an MLD (Manual Lymph Drainage) therapist for you so you can get the treatment done.

    You don't mention where you live but the fact you use the term GP suggests you may be from the UK

    This link will help you find a therapist where you live

    Hope this helps

  • Also, have you been examined to rule out a cellulitis infection? About a year after my surgery, I went to an out of hours service at the local hospital (why do these things always crop on a Friday evening!!) following a day of pain and heat in my breast. I was given anti-biotics.

    MLD is an excellent suggestion too - I say that not just as a therapist ( :) ) but having had MLD as a patient - a few sessions reduced the lymphoedema and took away the nagging ache that had set in shortly after the radiotherapy finished.

  • Of course there is LOTS that can be done!!! First of all, if you live in the UK, you might want to call your breast care nurse, she will (hopefully), know a bit more. Cellulitis is a real worry, it cannot go away by itself!!!!! If your breast is hot and red, YOU PROBABLY HAVE CELLULITIS and should demand and get a course of antibiotics. The Lymphoedema Support Network have lots of information as does a website called Step-up Step-out (North American, mostly US)--you can google them. On both sites you can find information about "truncal lymphoedema" that you could print out and take to your doctor. The Lymphoedema Support Network has an on-line course to raise awareness in gps that you might find out about too. There is lots you can do by yourself, once you get it under control. Do not be fobbed off about this, you need and deserve help, and it is out there. If you live in the UK, at least some of it should be NHS provided--there ARE NHS lymphoedema therapists and nurses, although they are thin on the ground.

  • Hi Quail

    Been to both sites you suggested, v.informative and helpful thank you very much. The Step up, step out was a hoot. lots of dance stuff and videos from a therapist - Donna Kim Brand.

    By this time I'm muttering Dance!! I hardly have the energy to walk and if it's not the dancing someone wants to mess with my head and reset the ageing brain. But I persevered and finally found the correct site

  • well, nan2high, your gp needs shooting (by which of course i mean 'have you encouraged him to look at the bmj learning module on lymphoedema?')

    an mld therapist will be able to show you sld (simple lymphatic drainage) that you can do at home, or there's a dvd you can buy from lsn that shows you how to do it

    but you don't want to encourage lymph to flow if it's infected with cellulitis, so go for that hypothesis first

    ask your gp - or, if it was me, another gp in the practice! - for a referral to the nearest lymphoedema service, & if they don't know where it is then get back to your breast care nurse & ask them, then get the gp to refer you

    there's loads they can do with lymph drainage, exercises, possibly a specialist bra / corset (i stayed flat & wear a corset - not as bad as that sounds - & most corsets that are off the shelf have cups in, they're like the ones women wear after breast augmentation surgery)

    if none of that gets you where you want to be, you could get a referral to your local plastic surgery service to look at what options there might be for surgery that's a bit more sophisticated than getting the whole thing chopped off!

    again, make sure you're referred to a breast specialist, & do all that other stuff first - the surgeon would want the best possible canvas to work on anyway

    but first, change your gp! you don't have to put up with that level of ignorance & the potential consequences, what if you were posting here just to check & you'd already had the mastectomy? i'm outraged

    good luck

  • Your 'history' sounds like a copy of mine! I developed lymphoedema of the left breast after surgery, chemo & radiation in 2002. My breast surgeon kept telling me , when I went for regular check up's, that it 'would settle'!! My left breast was literally twice the size of the other one! 18 months after surgery I made the big mistake & 'flew' overseas without compression garments ( another story!! ) & developed lymphoedema of the left hand. My breast surgeon then referred me to a MLD therapist ( see national register!! ) who was horrified at the state of my left breast! Needless to say she treated both & to this day ( keep doing your daily exercises! ) my hand is 'normal' & my breast slightly larger then the right one!

    Insist on a referral to a 'properly trained' therapist!

    Good luck!!

  • Just want to add my support for you and echo all above advice. You should not have to put up with this pain and discomfort or your rather insensitive GP.

  • Hi nan2high, I was diagnosed with breast and chest wall Lympoedema 2 years ago. Apparently I had the worse case my nurse specialist had seen. You should never have been told nothing can be done. I have manual lymph drainage (Mld) and have been taught how to do simple lymph drainsge (sld). Please ask LSN if there is treatment in your area. I can hear your frustration but there is help out there. Take care.

  • Thank you all so much for your advice, help, support and good wishes. I will try to push for therapy and to determine if there is cellulitis present. My G.P. is really a concerned bloke but he has never seen anything like this in his all experience. Thanks again.

  • Hi nan2high perhaps you could list some of the suggestions on here and show them to your GP. The area we live in has seen 134% rise in the cases of Lymphoedema in recent times.

  • Hi Nan2high

    Please do ask your GP for a referral to a lymphoedema clinic - lots of therapists are now able to carry out compression bandaging to reduce breast oedema using the two layer bandages and lots of ladies find that kinesio tape is also helpful. A lymphoedema therapist would also be able to advise you about cellulitis. The LSN do a leaflet about breast oedema - give the office a ring on 020 7351 4480 and they will get it sent out to you

  • Thank you, I've done all you suggest. Will see therapist Friday.


  • hiya nan2high

    i'm sure your gp's a lovely bloke & would be great to go for a drink with, but he's not paid to be concerned - he's paid to know stuff!

    & more importantly, he's taken an oath that says 'first do no harm' - if he's never seen anything like this before, there's plenty he could do to increase his knowledge before suggesting that getting your breast chopped off might help him feel less concerned!

    you can tell him from me that getting one of his testicles cut off might help me feel less concerned about his poor practice - it's more than insensitivity!

    if you or i don't know the answer to a question, we don't pluck the idea of a bit of butchery out of thin air!

    right norberte, you can get off your high horse now

    i hope he's apologised & had a look at the bmj learning module &, more importantly, referred you to people who can be a bit more helpful

  • Hi everyone

    Today I had a call from the lymphoedema therapist at Crosshouse and I have an appointment to see her on Friday. I am amazed she can see me so soon and that something is going to happen. I feel better already.

  • Hi

    Just a thought, my local hospital gave me some 'chicken fillets' to help even up the size of my smaller breast. It was the Orthotics department. The nurse was really helpful and helped me get the correct size and show me how to wear it. I know this doesn't answer your question, but could be helpful. PS. sack the doc!

  • PPS. isn't this a great website?!

  • Hi

    Yes this is a great website, full of helpful ladies and links to loads of information. Thank you all so much.

  • Hi everyone

    My G.P. said he thought there had been lymphoedema therapists down at the Hospice and he would try to get a referral that way and get back to me. So Impatient as ever, I thought I'd call the hospital and see if they had a reference and if I could speak to anyone who could give me some advice while I waited for an appointment. The next day a therapist called me and asked me to come up to see her yesterday.

    It was amazing! She gave me massage and showed me how to self massage and I have two appointments for next week for more. It is wonderful that something is happening, hopefully this will bring a bit of relief.

  • I also have the pain and crawling sensation under the skin that sometimes becomes unbearable. I found that if I buy small ice packs that you put in lunch packs and apply them to my skin it deadens the pain and irritation. I also use Ibuprofen express from Wilkinsons they are the only ones that work for me but consult your doctor if you are unsure about Ibuprofen. I found the ice packs, ibuprofen and exercises helped me when I get flare ups.

  • Thank you, Linda6, I'll ask therapist about exercises tomorrow, I have ice packs & my daughter in law works at Wilkinson's so that will all be good.

  • Regarding the skin quality. i had my reconstruction/implant removed after years of infections, it had gone as hard as my kneecap! The plastic surgeon agreed to try fat transfer(liposuction from thighs and injection into the breast area,) to see if it would build up a new breast. Sadly, most of it was reabsorbed, but the skin quality has been restored to my pre treatment state, apparently the t cells rejuvenate the area. There is a small risk that if there were any cancer cells still around in the area, they would also get rejuvenated. in my case it seems fine. It might suit you if they are willing to try...why not discuss it with them?

    I am now going for DIEP at age 64, with the same brilliant plastic surgeon, so if any of you have some confidence boosting comments I am in need of them. It wont be perfect as I have had a liver op before which has reduced his options, eg scar and reduced perforators.

    I am also a bit scared as its a 6 hour op!- some people think I'm silly going for it as it is unnecessary, but I would like to have 2 breasts again.....

  • Hi Bestbrush

    Thank you for sharing. I am currently having manual lymphatic drainage and trying simple lymphatic drainage myself. I don't notice much difference as yet. I have been given a compression garment but unfortunately it is not close fitting or comfortable to wear. After my experiences I would not care to have further surgery unless absolutely neccessary.

    Could you explain a bit about DIEP please.

  • I would suggest MLD ( mild lymphatic drainage) its a very gentle light for of massage that helps drain the lymph areas where you have the trouble. You can have so many for free on the NHS, then you would have to pay after that, but anyone i have spoken to says its wonderful and also beneficial emotionally also. Try and locate tour neatest MLD nurse in your area for a chat.

  • I hope that nan has got some help by now - this is quite an old 'original post'. I have noticed that HealthUnlocked have been sending me emails featuring old posts - I wonder if they have having a clearout!!!

  • Thank you for for all the help and advice I have received over this time. I have many people to thank and I feel physically better for the treatment but I don't think I will ever be reconciled to the ongoing lymphodema which has spread to my abdomen, very lop sided now and sadly also, I think, to my left leg despite my best efforts.

  • Thank you Ninewells, I am having MLD as you suggest at my local hospital from the lymphodema therapist but altho' the breast is improving the lymph. seems to be spreading downwards to my leg via abdomen and belly. I am increasingly lop sided & unhappy. I'll see the therapist again this week and see what she thinks. Thanks again for your concern.

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