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Lymphoedema

5 REPLIES 5
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Member

Re: Lymphoedema

I also developed breast and arm lymphoedema after rads last Autumn . I have had some MLD, which I had to really push for. Mobiderm doesn't seem take any difference, just leaves dents in boob. 

Compression bra was no use whatsoever, didn't offer any support. Normal bras are almost impossible to get to the fit properly when the swelling makes you a JJ cup. Doing SLD twice a day. When you look down the affected side is 2cm bigger than the other on a good day. 

Asked to be referred to a specialist in London and was refused. I wanted to know all my options as local service is too limited by funding. They don't follow up or review regularly. 

Not enough care or support is provided for after effects of treatment. I had three large WLE's and team think I'm barmy when I say I now wished we hadn't gone for conserving treatment. But they don't live with it and have no idea how it makes you feel to look so ugly daily. I'm in my early 50's and it has has a massive impact on my self image and confidence. 

 

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Member

Re: Lymphoedema

Hi Polly, I developed lymphedema a few month after surgery in the arm of the mastectomy side, and can only confirm that you need patience and use compression garments, if possible. I also got really good information and free treatments at Haven (https://www.breastcancerhaven.org.uk/) and from first-hand experience I can say that singing (I sing in a choir) amazingly stimulates the lymphatic system through all the deep and intense breathing you do... 

All the best for you

x

 

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Member

Re: Lymphoedema

Thank you for replying I found it really helpful.  I have had about 5 sessions of MLD at the clinic so far and I SLD twice a day.  I have also tried kinesio taping but that didn't seem to do much good. I have an assessment with them Friday week. My oncologist signed me off after my radiotherapy finished so it was interesting to read what your oncologist said.  It was my surgeon that referred me to the Lymphoedema Clinic after my GP referred me back to the breast clinic.  I will certainly try Mobiderm can I ask where you get it.

The clinic have given me a strip of ridged foam to wear inside my bra daily to stimulate the lymph nodes.  Perhaps I'm being impatient expecting things to happen too soon.  

Once again thank you.

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Member

Re: Lymphoedema

Hi Polly,

i developed the same last January which was about 7 months after surgery (5 months after end of rads). I had weekly MLD and did SLD daily. I also tried kinesio taping ( what physios use), but that made it a lot worse. It took about 3-4 months of weekly MLD to see a real difference and I still see the lymphoedema clinic every 6 weeks or so. It’s still a bit swollen but not nearly as bad as it was last year. It’s likely that the swelling is permanent, but keeping up with the treatment keeps it under control. My oncologist said sometimes the swelling lasts for 4-5 years and over that time very gradually returns to normal. The other thing I find really useful is Mobiderm , which is foam cubes wrapped in a strip of gauze. Put it in a loose soft bra and wear it overnight. It really helps bring the swelling down.

 

My lympho nurse told me that the effects of MLD are cumulative so it will take a few weeks for you to see a difference, so keep going with treatment. Even though you don’t see it working it probably is, by opening up new lymph channels.

 

hope that helps

 

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Community Champion

Re: Lymphoedema

Hi Polly - I’m sorry to hear you’ve developed lymphoedema. I’m afraid I can’t help but wonder if you have tried speaking to the Lymphoedema Support Network - 020 7351 4480 (recommended also by BCC), www.lymphoedema.org. I called them for advice on prevention and they were really helpful.

All the very best to you.

Evie xx

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Member

Lymphoedema

Couldn't find the right forum to post this on so.......I had a lumpectomy with two sentinel nodes removed last November.  I have now got lymphoedema in my breast.  It developed about two months ago and although I am receiving MDL once a week and also doing it myself in between times nothing seems to be working.  I am massaging with ginger oil as I've been told that is good for the lymphatic system and I'm also having reflexology.  I have got and assessment at the clinic Friday week.  I was just wondering if anybody had any ideas.  Thanks.