Lymphedema or swelling from surgery?

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mellee
mellee Member Posts: 434
edited December 2016 in Lymphedema

I'm 5 weeks out from a bilateral mastectomy with axillary dissection (32 lymph nodes removed). I went to the physical therapist and my right arm is 2 cm larger than the left. She's saying this is lymphedema, but my surgeon is saying that it's too early to tell—it could still be residual swelling from surgery.

What was your experience? Did anyone have swelling that gradually went away? Or do I need to resign myself to permanent lymphedema?

I will still do my exercises and lymph massage, but I'm hoping that there's at least a chance that this is just from surgery!

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  • xxyzed
    xxyzed Member Posts: 230
    edited December 2016
    I had 20 nodes removed and at 5 weeks after surgery was 2cm bigger. I am now 7 months from surgery. My arm has been up and down during chemo and seems to have settled during radiation. My therapist is hopeful that I won't be wearing the sleeve forever and that over time it should come good. I will go back for measurements again in 6 weeks but I'm confident its size will be trending downwards.
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  • mellee
    mellee Member Posts: 434
    edited December 2016

    That's encouraging! Glad to hear it.

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited December 2016

    I woke up from surgery with LE.

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  • Kicks
    Kicks Member Posts: 4,131
    edited December 2016

    See an LET (LymphEdema Therapist). They will either be a PT (Physical Therapist) or OT (Occupational Therapist) how has additional education that deals with LE. Not all PTs or OTs have this education which is important.

    Unfortunately - MANY Drs are woefully uneducated/ignorant when it comes to LE. I was one of the few lucky ones in that my Dr noticed mine before I did. Mine showed up 9 weeks post UMX when I was 1/2 way through 12 weekly Taxol.

    It is possible that you are dealing with swelling left over from surgery - has it been there all along or is it 'new'? It is also possible that it's LE. It is important to see an LET sooner rather than later for education and evaluation/measurements.

    As far as I am concerned - LE is just a bit of an inconvience that I deal with with my day garments, night garment and FlexiTouch. It doesn't slow me down at all or keep me from being a very active 'outdoor woman'. I've been dealing with LE for almost 7 yrs with no issues that have limited me in any way from doing any/alll I want to do. I'd much rather be 'here' to live everyday to the utmost I can with just a small inconvience to deal with than to not be 'here' at all.

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  • mellee
    mellee Member Posts: 434
    edited December 2016

    Thanks for the perspective, Kicks. It's too easy to focus on LE horror stories and start freaking out. It helps to hear that it hasn't slowed you down.

    And yes, it's crazy how uninformed doctors can be about this. My surgeon knew about lymphedema of course, but I had to bring it up and ask for physical therapy. And he had never heard of axillary web syndrome. What's more, when he presented my case to a tumor board, none of those doctors knew about it either (although when he described the symptoms, they recognized it). In contrast, the PTs I've spoken to know all about it. Thankfully, my surgeon was willing to learn about it and found me an experienced LE therapist who definitely knows what she's doing.

    My swelling is only in my upper arm, and has been there since surgery. So I guess that's a good sign. But I guess I'll only know with time.

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  • xxyzed
    xxyzed Member Posts: 230
    edited December 2016

    Mine is in my upper arm too. Prior to surgery my surgeon said the most likely complication with so many compromised lymph nodes would be lymphedema and I was given a referral to a therapist immediately after surgery. Both the oncologist and radiologist have also made sure I am connected with a therapist. All of my specialists appear to be very educated in lymphedema and have made sure the appropriate assistance is provided

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2016

    Mellee - better safe than sorry. I have mild truncal & breast LE. I wear a compression bra 24/7 and I wear sleeves & gauntlets to fly or for repetitive tasks. I'm hoping to keep it from progressing. Only my RO thought it was the problem - and sure enough... The link below has lot of good info, but together by some of our very own BCO ladies.

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


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  • mellee
    mellee Member Posts: 434
    edited December 2016

    You're right, better safe than sorry. I will definitely be following through with physical therapy. Thanks for the link!

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