Could I have Lymphedema?

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JustJean
JustJean Member Posts: 327
edited June 2014 in Lymphedema

Bilateral mastectomy 11 months ago. Had expanders in for about 3 weeks and then had them removed. Then I got a pulmonary embolism (cancer - the gift that keeps on giving). My overall physical condition isn't very good at this moment.

I had been seeing a "regular" Physical Therapist. He is a good man but he is not trained in oncology-related issues and I don't think he knows what to do for me other than general exercises to help with overall conditioning. While that is good, it doesn't address the issues that I have in my poor mangled chest area. Numbness where those pockets of fat are, pain in the chest wall, pain/stiffness in the whole upper back/shoulder area.

On the recommendation of my breast specialist, who I adore, I made an appointment to see a women who specializes in bc/oncology patients. I've seen her twice. AWESOME woman -  spent an hour gently breaking up dozens of adhesions on my chest wall, already giving me some relief.

She is very aware of LE and did measure my arms the first time I saw her. The second time I saw her, which was yesterday, she did more adhesion work and we were discussing LE. She said to me that we had run out of time last week but that she wanted me to pay special attention to doing some drainage exercises because of the swelling in my arm. Huh? Then she tells me that there is a 7% difference between my left arm (where nodes  were all taken) and my right (no nodes taken).

I don't see any noticeable difference between the arms, either visually or in usage. When I asked her if I had LE, she said it was possible, but for now all she knew for sure is that I have some swelling in my left arm.

Those nodes were removed about six years ago after my first encounter with BC.

Any thoughts that anyone would care to share with me? I'd appreciate any help...

Off to work I go...

 JJ

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  • Suzybelle
    Suzybelle Member Posts: 920
    edited April 2011

    Yes, it's very possible you could have LE.  I'm sure she asked you about any pain, etc., in that arm...if you're on tamox. of something similar, blood clots can be an issue.  I have had 2 ultrasounds over the past year because my onc. was worried about that - both times it was LE.

    I would think it's really mild if you do have LE if you're not experiencing any discomfort.  It sounds like you are right on track to take care of it if it develops into LE, or if that is what it actually is, and you have caught it early, in any case.

    So sorry you even have to ask - bc just plain sucks.

    Stick around here - we're an awesome bunch, even if we are a little puffy and swelled up!!!  Cool I would also see if your breast specialist can't get you in with an actual LE therapist (that's Vodder trained and certified) vs. a regular PT.  Unfortunately, they don't know much about LE or how to treat it, normally.

    Best of luck to you!
    Suzanne

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  • JustJean
    JustJean Member Posts: 327
    edited April 2011

    Hi Suzanne, and thanks for the reply!

    I'm not sure which technique my new PT was trained in, but I will find out. I am amazed at her knowledge, tho, MUCH more than other PT's I've seen. The only thing she works with in her practice is oncology patients and the vast majority of them are breast cancer patients. None of the other two PT's I'd seen even suggested measuring my arm, or exercises to drain the system, or had any type of discussion with me regarding LE. She did all that plus asked me if I had a sleeve and gauntlet (I do, for flying) and had me bring it in so she could look at it to make sure it was the right thing for my situation. She also said that at some point, when we get to more "exercise" than stretching, that she may have me wear one during those times. At least, I think she said that... chemo brain is a terrible thing!

    She has been doing this work for 17 years and is a cofounder of The Gathering Place, for people whose lives have been touched by cancer, here in the Cleveland area. It's a bit of a drive to get to her and my coworkers aren't happy that instead of being able to see my "old" therapist outside of work hours that I'm gone during work hours to see her, but quite frankly, I don't give a da** what they think.

    I think I was so shocked to hear that there was a 7% difference that I don't remember all she said and certainly was not in my right mind to ask questions.

    Lymphedema. Let's see... cancer and diabetes and pulmonary embolisms weren't enough, eh? ...sigh...

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  • flopsy
    flopsy Member Posts: 365
    edited April 2011

    justjean,   I just had my LE eval last week and my level was just above normal on my left arm that nodes were taken from about a year ago.   My LE is mild but it is definitely there.   Mine first seemed to make the arm just feel a little heavier and slightly achy which got worse at it worsened.  There is a post from LINDALU that shows really well what to look for and how to assess for it.  You might want to check that out in the LE thread.  It has been bumped toward the top of the thread.   Her info has really helped me a lot.   Good luck to you and hope you find out something soon.  Ginny

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  • JustJean
    JustJean Member Posts: 327
    edited April 2011

    Thanks, Ginny, for the reply. Is the post you refer to the one that has all the great photos in it? I have none of those symptoms.

    I think if I have LE it's a very mild case. At least, I've not noticed ANYTHING out of the ordinary  - both arms have lost muscle and gained flab and sag, lol. and I don't see any differences  between the two. Please, I've been through enough the last year, haven't I?

    You can bet that I'll be paying very close attention to what she says when I see her again next week.

    I hate cancer. But I hope my new PT will be able to help me hate my "new normal" life a bit (well, I hope for a lot) less than what I do now. People who haven 't been through it have no idea how debilitating chronic pain can be.

    JJ

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