Breast Lymphoedema

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kerrie389
kerrie389 Member Posts: 66
edited June 2014 in Lymphedema

Can anyone tell me what breast lymphoedema feels like.

I have had a tram flap reconstruction almost 12 months and my new boob feels horrible. I have LO in my arm so guessing it is in my breast as well.

The top part of my breast  fells full hard and very uncomfortable. It is the  same area where i had very bad burns from radiotherapy although that was almost 2 years ago now.

I have had 2 ultra sounds but nothing sinister shows but this feeling of discomfort just scares the hell out of me.

So maybe it's scar tissue...

Any advice would be greatly appreciated.

Kerrie 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2012

    Kerri, hello,

    I get it about being scared, and I'm sorry you're dealing with this. Really glad the ultrasounds found nothing worrisome, but that sure doesn't stop us from worrying until we have real answers.

    Fullness, hardness, discomfort or even outright pain can all be signs of lymphoedema. Here's information about it:
    http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

    Doctors can be slow to recognize breast lymphoedema, so you might want to bring it up to any doctor on your team and request a referral to a well-trained lymphoedema therapist. Here's how to find one near you (even in Australia) if you don't already have one:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    If it's lymphoedema, therapy can reduce the hardness, any swelling, and the fullness and discomfort. Treatment involves Manual Lymph Drainage and compression, as well as good skin care and simple exercises to help promote lymph flow.

    I'm sure others will be along to share their own experiences with this. Please let us know what you discover.

    Gentle hugs,
    Binney

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  • kerrie389
    kerrie389 Member Posts: 66
    edited June 2012

    Binney thank you so much for that information.

    I think i definately need some compression camis. So uncomfortable wearing bras with the scar tissue under the breast.

    And i always feel more comfortable when my sleeve is off too.I think the constriction at the top of my arm causes nerve pain in my breast. Just my theory but who knows!

    Thanks again for the info. You really are such a wealth of knowledge. 

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  • B123
    B123 Member Posts: 730
    edited June 2012

    I had my BMX in Feb 2012 and my right arm (tricep) is numb, tingling, slight burning or pinching sensation upon touch and reaching.  Is this lymphodema? Im worried it may be something to worry about??

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  • carol57
    carol57 Member Posts: 3,567
    edited June 2012

    Aww, B123, it sure sounds like it could be LE.  Best way to find out is to ask one of your doctors for a referral to a qualified lymphedema therapist, who will give you a full evaluation.  Here's a wonderful resource to help you figure out how to find the right person to evaluate you:

    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm  

    If you have not visited stepup-speakout yet, spend some time browsing the pages, because you will find lots of very helpful information while you work on getting an evaluation.  What you can do right away is elevate that arm (even on pillows at night), drink tons of water, and do deep breathing --deep enough to make your belly expand, and then exhale slowly. Do this five times, three or four times a day, or as often as you think of it (it moves lymph fluid).  Also put your arm up as straight in the air as you can, and pump your fist twenty times, slowly...do as often as you can think of it (also moves lymph fluid).

    So sorry you have to even wonder if it could be LE, and hopefully it's not, and it's something simple. But best to find out, because early treatment is helpful in your goal to reduce symptoms.

    Keep us posted on what you learn.

    And -- sending you some virtual brownies to make the annoying tingle go away (don't we wish it were that simple, sigh...)

    Carol 

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited June 2012

    Kerrie. About a year ago  I  found that compression sleeves ending at the Axilla make me feel weird in the back behind the armpit. Since then I wear the juzo with the strap that crosses over the chest to keep it up... I have had less problems,(except the chest buckle digs in some times, need to cover it in soft material). It comes over the shoulder not around the bicep.

    When I wear a normal looking sleeve, I get more sensation than usual in the back of the armpit. I am thinking that your top of your arm is being squeezed too much and the fluid is collecting in the breast. Just a thought. Oh, I wear off shelf garments. I am sure custom would be better if you can afford it.

    Order a swell spot for your breast and stick it in your cami.  No bras please! 

    B123, I had tingling and pullling, pinching after BMX but it went away after a few months. I think it was nerves healing. But I do think you should get checked out by a certified Lymphedema person who is a good judge.  We are here to help you. 

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  • kerrie389
    kerrie389 Member Posts: 66
    edited June 2012

    Thankyou Hugz4u,

    You have said exactly what i have been thinking. 

    Whenever i have constriction at the top of my arm i get a neuralga sort of pain in my arm and breast... feels so aweful and terrifies me,andmy breast seems to swell.

    I have just started to wear a lymphodiva sleeve and there is no retriction at all at the top of  my arm.

    I have started towear an ahh bra as the others are too consticting and with the combination of the looser sleeve it all fels so much better.

    Somtimes i think with compression... in my case anyway... less is best!

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  • B123
    B123 Member Posts: 730
    edited June 2012

    Thank you so much Carol57, I think you are right! I never knew I would get this and had no idea what it was.. scary!  I will look into what you mentioned above and do the things you mentioned to help.  I thought with LE you would see divots (well, I do have one small one under the armpit).  But thank you so much for responding, I truely appreciate it! Hope you are well my friend! Will let you know what happens..

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  • carol57
    carol57 Member Posts: 3,567
    edited June 2012

    B123, Please do keep us posted! 

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