Abdominal Lymphedema

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mom3timz
mom3timz Member Posts: 42
edited June 2014 in Lymphedema

My mother had a mod rad mast (left side) on 1/31/2011. At first we thought the abdominal swelling was just post surgery stuff. No one was worried. In the last week it's become larger and is obviously only on her left side. We began to suspect lymphedema.

We saw the oncologist Monday and he'd announced he'd never seen such a thing. Surgeon appointment (just routine post surgery) was set for next Monday and she planned to wait... but it must have really begun to bother her today because they just called me from surgeon's office.  Guess we'll see what he says, but I would assume that is what it is for now?

Just had a PET scan recently as per the onc and it was fine. All clear. (YAY!) 

Anyone have experience with this? I tried a bit of Googling, but the results weren't so helpful. Decided to check here.

Thanks for any info. 

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  • mom3timz
    mom3timz Member Posts: 42
    edited March 2011

    Oh, surgeon is saying he's never seen that and no big deal... I'm thinking she needs to have it checked at a lymphedema clinic.Thoughts?

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2011

    I have truncal LE which affects my upper chest/torso. Abdominal swelling could be acites, which is what the surgeon would have checked I'm sure. Is she constipated at all? That can also cause swelling, and most people won't even talk about it. You can get constipated from pain killers, in fact, it's called "Narcotic Gut". The narcotics "paralyze" your intestines so they don't move the crap along....literally. Let us know what happens.

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  • mom3timz
    mom3timz Member Posts: 42
    edited March 2011

    Nope, not constipation... they asked and she was truthful, she's a nurse and knows the importance of that. Not gas either. It's definite tissue swelling. 

    She did go ahead and put on a tighter fitting cami for now. Poor thing. 

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2011

    Poor thing is right! I'd like to know what it was when you finally find out. That's a weird one for sure.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2011

    3xmom, does she also have lymphedema in her arm or chest? It's not unheard of for it to "migrate" to the other side of the chest or even to the abdomen, but it would be strange for it to start there. Has she been doing Manual Lymph Drainage massage and moving fluid in that direction, perhaps? Do give her a hug for us and keep us posted on how she's doing.

    Barbe, really nice avatar pic! Lovely -- and cheery too!

    Be well,
    Binney

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  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2011

    I looked like I was ready to give birth for almost two months after the BMX. It was not unilateral though. It took a while but it finally went down. Ladies who are members of the picture forum could see it. It was really bothering me.

    I also have horrendous gas after anesthesia - and I did have it awfully after that first surgery - it lasted 10 1/2 hours so a looong anesthesia.

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  • lymphedemapeople
    lymphedemapeople Member Posts: 47
    edited March 2011

    Hey 3xmom

    The very best thing your mom could do is to get to a lymphedema therapist.  The fact that the surgeon says he's never seen such a thing, doesn't mean abdominal LE doesn't exist.  I have it severely.  It first started back in 2006 after chemo.  It now has spread even further, seriously filling my lungs as well. I have three tubes in my chest and I drain the lungs every several days.

    It can be very very miserable and does horrible things to your quality of life, so please have her get to a therapist asap.

    BTW, I used to live in Portland, Oregon (1960's-1980's) and the doctors I saw at the Oregon medical school acatually wrote a report on abdominal LE caused by abdominal surgery - and the year they wrote this was 1963. 

     Pat 

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