LE/Fibrosis/Cording or Local Recurrence?

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marymoir
marymoir Member Posts: 245
edited June 2014 in Lymphedema

Hi Ladies.  I've been having swelling/pain in the "bad boob" (and underarm on that side) since October 2010.  Surgical onc. sent me for PT with a wonderful LE therapist.  Despite 2 mos. of MLD & myofascial release to break up scar tissue/cording, and 2 weeks of using my "Flexitouch" daily, the swelling/pain in my BC breast is persisting.    The therapist says it seems to be under the pec wall.  So of course I come back to my "middle of the night" worries that this might really be a local recurrence. 

My breast onc. has said that he would send me for an MRI if it would "put my mind at ease," but he's pretty confident that this is all due to surgery/rads + a horrific case of breast cellulitis that started after a biopsy last summer.   The only reason he is averse to doing an MRI is he thinks with all the tissue damage, the MRI will probably show a lot of "stuff" that could look like BC, leading to more biopsies & risk for worsening the LE or another bout of cellulitis.

After that long-winded intro, my ? is this -- did any of you ladies ever have an MRI to make sure that the LE symptoms weren't really a local recurrence?

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  • sushanna1
    sushanna1 Member Posts: 764
    edited January 2011

    I hope that by bumping up this post, some one will be able to answer your question.  Just curious, but have you talked to your surgeon re: the advantages versus disadvantages of having an MRI?  It would be a relatively easy way to get a second opinion.  Good luck.

    Sue 

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited January 2011

    Hi Mary,

    I can't really answer you questions but I understand your concern.  I starred having a huge red rash & swelling on my chest wall & underarm on the bc side in July 2010. (I've had a BMX with node dissection.) I was already having LE issues on that side as well.

    My rash wasn't going away so I went to my breast specialist and she did a biopsy that was negative.  My pcp said I have seroma and gave me steroids & antibiotics.

    I thought well let's get to a LE therapist and started the MLD. My arm was better, rash was a little better.  Then in November I spiked a temp and woke up with a massive rash.  After urgent care, ER & 3 days of IV antibiotic for cellulitus. 

    Now it is January and it still hasn't completely cleared.  I go back to my BS next week.  I hope she has some answers for me. She is awesome, but this is driving me nuts.

    So I understand your concern & frustration. NJ

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

    Hi, Mary,

    What a dilemma!Surprised You sure don't want a lot of craziness from false positives on an MRI, but the "not knowing" is enough to drive anyone nuts.Tongue out If it were me, I'd be with you in wanting things checked out thoroughly, but different people have different tolerance levels for living with uncertainty, so it really does have to be your decision. It's fairly common for doctors to rule out blood clots or new tumor formation when there's new swelling or pain in an arm with LE.

    Because lymphedema involves fluid that is scattered all around in the interstitial spaces between cells, it's not something you can see with the usual imaging techniques (you can see a seroma with an ultrasound, because it's a "pool" of fluid, but you can't see what's in between the cells), so nothing you're proposing would give you a definite LE diagnosis -- it would just rule out other things.

    I did not have a lumpectomy, I had a mastectomy without recon, so my chest is obviously different to deal with than yours, but my therapist taught me a massage of the deeper nodes in the chest with a small circular movement with the tip of a single finger between the ribs. It's very helpful to me in easing the painful LE flares I get in my chest. I have no idea how much you could do of that with a breast still there, but I'd think some stimulation of the deeper nodes should still be possible wherever you can feel your ribs. Has your therapist been doing that sort of thing?

    Sorry I can't be more help! Do please let us know what you decide to do and what you discover.

    Gentle hugs,
    Binney

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  • armadillo1
    armadillo1 Member Posts: 16
    edited January 2011

    Does anybody have trouble with scar tissue?  Well I do and it really hurts when the weather get cold.  Sometimes I feel like I have a knife sticking in my scar area.  Have been going to P/T twice a week and she stretches and tries to break the scar tissue up....she says it will be a continuing issue.  Any input from anyone?  My LE is pretty much under control, just the discomfort of the scar tissue...

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