Need Help ~ Truncal ?

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CAW
CAW Member Posts: 45
edited June 2014 in Lymphedema

Hi Ladies ~

 I have mild LE in my Right arm and some truncal.  My question is....I have been experiencing a lot of discomfort in my right rib cage and wondering if it's truncal LE or something else going on.  I feel like someone has blown a balloon up inside my rib cage.  I don't have any visible swelling and I have been doing my LE exercises and MLD but nothing seems to be making much of a difference at this time to relieve the discomfort.  For those of you with truncal LE....is this a symptom that you have experienced before or do you think I better be looking into this for a possible issue of another kind?  Thanks in advance for any advice! 

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  • kathleen1966
    kathleen1966 Member Posts: 793
    edited August 2011

    I believe I have a bit of truncal lymphedema in addition to lymphedema in my arm and my rib cage area on the "cancer" side is/was tender from time to time.  It was very tender during treatment.  I never thought anything of it.  Maybe because it would get all red when I took my prendisone. This told me that it was inflammation. I am a year out now and I have not had this pain for about 5 months...I hope this helps! 

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

    I have mild truncal LE and it hurts!!!! I know to do my MLD moves on schedule when it happens, but otherwise I just let it go until I feel the pain again. When I catch myself rubbing my chest I know it's starting up again.

    If you had surgery that used a drain, that site can be sore for a long time too! I also have costochondritis, look that one up. It's inflamation of the rib cage! Who'da thunk it, eh?

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  • dlb823
    dlb823 Member Posts: 9,430
    edited August 2011

    CAW, I also deal with mild truncal LE, and heat seems to really exaccerbate it.  So if your symptoms have appeared or gotten worse since it's been so hot in recent days, that could be a clue that it's LE. In my case, when I get a flare, it's very painful.  For some reason, the pain makes me think of breaking glass -- sharp, but also a bit diffuse and moving, if that makes any sense.  Also, it's a hard area to see to judge swelling yourself.  It might be more obvious to someone else.   Deanna

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

    My onc saw the swelling on my back near where the drain came out. It's very mild, but when my DH would rub my back with cream, I'd say ouch, ouch, every time he hit a cerain spot. He kept saying nothing was there, though. Then I found out about the LE. It is a hard to describe pain....

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  • CAW
    CAW Member Posts: 45
    edited August 2011

    Wow....thanks for the quick responses.  I'm 7 years out from my BC surgery and didn't develope LE until 1.5 years ago which started out in the arm.  I started having truncal issues about 7 months ago.  I have had painful ribs off and on for the last 7 years after going through radiation.  I had been dealing with sore ribs for the past few months and then the pressure started underneath the rib cage about a 8 wks ago.  A good way to describe other than the balloon feeling is....it feels like someone has a blood pressure cuff around my ribs and is pumping it up.  I suffered from heat exhaustion 3 weeks ago and I will say....I think it has made the discomfort worse.  I also have discomfort laying in bed certain ways at night as well, due to the pressure under the rib cage. 

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

    If it's been that long, perhaps you should approach your PCP or onc, wouldn't you say? The usual rule is if something odd/painful continues for more than 2 weeks to get it checked out. LE has been known to start as long as 20 years out from surgery!

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  • dlb823
    dlb823 Member Posts: 9,430
    edited August 2011

    CAW, your description of the blood pressure cuff made me remember that I had a scary episode a few weeks ago when I felt like I couldn't get a deep breath -- like my lung was being squished, along with the more common truncal LE pain.  It only lasted a day or two though.

    If you've been having the pressure you describe under your ribs constantly for 8 weeks, I think getting it checked out would be the prudent thing to do.  It could be so many things not even related to bc.   Deanna 

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

    Deanna, that sounds scary for you too!!! Did you resolve what it was?

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  • dlb823
    dlb823 Member Posts: 9,430
    edited August 2011

    Barbe, it was very scary.  But it happened the day after I'd gotten very overheated doing my morning walk in way over 100 degree heat, and it only lasted a day.  I actually used cold compresses (my DH's idea), which I later learned isn't a good thing to do for LE.  But just using them for a short time seemed to ease the truncal LE symptoms and lung pressure without exaccerbating the problem.    

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  • CAW
    CAW Member Posts: 45
    edited August 2011

    Hi Ladies ~

    Since posting my last reply....I had a CT scan done.  Due to my heat exhaustion 3.5 weeks ago, I have been feeling bad and it was really concerning me about having the feeling of a balloon in my rib cage / pressure. It is very uncomfortable during the day, and at night...it is hard to get comfortable sleeping due to this feeling of something being under my ribs. It scared me enough that I had a CT done in fear of a mass being there.  Thank goodness it didn't show anything!  I guess I need to go see my LE therapist and have her give me guidance on what to do with these ribs since I'm assuming it must be truncal LE causing this discomfort.  I'm able to keep my arm LE under control so hopefully I can do the same with this.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2011

    CAW, check out those new jovipak swell spots for chests, they look very helpful.

    So glad it's "just LE"

    Kira

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  • KS1
    KS1 Member Posts: 632
    edited August 2011
    Sorry to intrude on the thread, but I need some truncal LE advice so I figured it fit under the topic. A couple of days ago I flew in what seemed to have been a not-very-pressurized small jet plane (everyone's ears were clogged for a day, one had bad vertigo, another a sinus headache...). My hand is definitely puffier than usual, but I am working on it. The problem is my side/back. I had a bit of axillary/side puffiness in the 6 -9 months post surgery but was told it wasn't LE and it resolved. However, this morning, my side is sore and there is a small pouch of squishy puffiness under my axilla toward the back. (It doesn't pit.)

    Except for special occasions or exercising, I stopped wearing bras or form-fitting camis about a year ago because they seemed to make my arm LE worse. I've got two questions. First, does what I describe sound like LE? And, second, should I get a shapewear camisole or t-shirt for the plane ride home (and possibly risk exacerbating my definitely LEarm)?

    I can't get one now to try it out because I am 1.5 hours from the nearest department or clothes store, but there are tons of stores near the airport so I could pick something up right before the flight. KS1

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  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2011

    KS1--Binney is a big fan of underarmour shirts turned inside out. It does sound like truncal LE, on the stepupspeakout page, we link a great article from the British Lymphoedema that shows photos of various presentations.

    Does MLD help?

    Hate to make the arm MLD worse for a transient problem, but I'd advise considering some compression on the trunk.

    PM Binney--she'll know what to do.

    Kira

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

    Sounds like my truncal LE. Does it hurt when you pass your hand over it? Don't poke. Just pass your hand....

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  • dlb823
    dlb823 Member Posts: 9,430
    edited August 2011

    KS, I agree it sounds like a bit of an LE flare.  Regular bras (especially underwire styles) should be avoided because they can cut off lymph flow.  But sports bras with nice wide sides that offer moderate compression seem to be helpful, at least for me.  

    Good luck figuring it out, and I hope it doesn't get any worse on your flight home.    Deanna    

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  • CAW
    CAW Member Posts: 45
    edited August 2011

    Hello Again ~

     More questions for everyone.  Since my CT scan, I also had bloodwork done and it has just come back that I tested positive for ANA (possibly Lupus). I am making an appt to go see a Rheumatologist to find out more.  Meantime, I am still concerned with the pressure under the ribs. It is so bad, that I just knew they would find a mass when the CT was done.  Thank goodness they didn't but the pressure is terrible.  It feels like someone is pumping my ribcage full of air....it moves around from time to time from upper ribcage to lower ribcage and sometimes the pressure is more in the front and then at times it will also spread towards the back.  MLD and LE exercises make no difference.  I have not been feeling well, such as weakness and light headed with occasional headaches since my heat exhaustion 4 weeks ago but my Family Doc thinks that since I just got the results for possible Lupus, that could be part of my problems but he's stumped on what would be causing this pressure under my right rib cage.  Has anyone else gone through this and have suggestions for me?  It's starting to really worry me and the discomfort is wearing on me.  Thanks again....

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  • kcshreve
    kcshreve Member Posts: 1,148
    edited August 2011

    Truncal support - I use Underarmour shirts turned inside out, too.  Long sleeved, a size too small.  This time of year it's nearly impossible to find the long sleeved ones for sale, so I recently ordered online through Underarmour.  They did not charge me postage and delivered in good time, if you have the time to wait before you fly again.  When I fly I usually wear a compression shirt, and then add my sleeves and gauntlet over that for coverage.  

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  • BeckySharp
    BeckySharp Member Posts: 935
    edited August 2011

    CAW--There may be no relation to me but I have truncal LE and have had rib pressure off and on.  I kept complaining about it to my therapist and she determined I had axillary web cording in my armpit.  It hurt from armpit down side of trunk over to ribs.  She has been stretching it mildly and it has been helping.  The cording was not showing possibly because I am overweight.  Do you have a therapist  you can consult with?  I  hope you can find out soon what the problem is.  Becky

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

    CAW, google costochondritis and see if it applies to you. I have it, and when it flares I'm sure I'm dying!! It hit me at work one time and a co-worker was about to call an ambulance when he saw how much pain I was in!!!!

    Right side pain could have been liver, appendix (but lower), gall bladder, etc, but I guess the CT scan ruled that out. Please keep us posted as you are in my prayers!

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  • CAW
    CAW Member Posts: 45
    edited August 2011

    Thanks so much for the replies and prayers! It is not costochondritis that I'm dealing with at this point. I've had that before and it was very painful to take a breath. This isn't causing pain....it's causing discomfort due to feeling like I have a mass under my ribcage or like a balloon is under there, so it's a "fullness" feeling. It sorta moves around and again...it's uncomfortable whether I'm sitting, standing or sleeping. Very frustrating!

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  • sisterinspirit
    sisterinspirit Member Posts: 204
    edited August 2011

    CAW,

    Sorry to hear about the positive ANA test.  Hope your dr can shed more light on what that means for you.  I don't know what is causing the discomfort in your rib area, but ask your LE therapist if some gentle rib mobilization or soft tissue work might help ease your symptoms.  Hope you feel better soon!

    Deb

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

    CAW, I sure can't tell you what this is, but for sure truncal lymphedema discomfort can move around. Before I was diagnosed it actually made me think I was crazy, because I'd try to point out where exactly I felt it and I'd realize it wasn't there, it was somewhere else. On and on.

    A feeling of fulless is also typical. There can be pain, but there isn't always. My therapist uses a special technique of small stationary circles with the very tips of her fingers in between the ribs to reach the deeper lymphatics where the congestion occurs. A not-so-experienced therapist might not know how to do that.

    Just some thoughts. I hope you soon have answers.

    Gentle hugs,
    Binney

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  • tnbcRuth
    tnbcRuth Member Posts: 454
    edited September 2011

    Binney - I have many of the same symptoms...the tight webbing, fullness of breasts (!) and thick feeling in armpit.  If there is swelling in the same spot as my alloderm sling (chest wall, armpit to armpit), that would account for the constant tightness.  The mx scar on the node removal side is sooo painful and usually swollen in the whole area.  I thought it might have been a new tumor, but it doesn't feel the same, my blood tests are fine and tumor markers same as last 3 times...10.5, soo truncal LE sounds about right.  I had a wonderful LE massage therapist, but I'm out of ins right now...but I did get a job, so maybe I can schedule something soon.  Thanks so much for listening and pointing me in the right direction.  Its been a year since my last chemo and surgery, so I SHOULD be healed.  grrrr, cancer, the gift that keeps on giving~  What is MLD?

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

    Grrr is right!Yell But it gets better, honest!Smile

    MLD is Manual Lymph Drainage, a very gentle directional massage technique that stimulates sluggish lymph vessels and clears fluid from the area. It needs to be done by a well-trained therapist, but s/he will also teach you to do it. Since you've already seen a LE therapist, she may have done it during your session with her. It begins with node clearing at the neck, axilla and groin, then clearing the chest/breast, and then the arm and hand. It's one aspect of Complete Decongestive Therapy, or CDT, which includes proper use of compression (garments or wrapping), exercise, and special skin care. More about CDT, including MLD, here:
    http://www.stepup-speakout.org/treatments_for_lymphedema.htm

    In the meantime, while you wait for your insurance to kick in (grrrrrrrr again!Frown), a lot of women find some relief my wearing a sports shirt (like UnderArmor), in a size smaller than you'd usually wear (but not so small it's uncomfortable), and inside out so the seams don't irritate your skin. Might be worth a try. Target has a brand that's more affordable than the UnderArmor.

    Also, stay REALLY well hydrated and pause whenever you think of it for a few slow, deep abdominal breaths. Both help move lymph fluid. 

    Keep us posted! Gentle hugs,
    Binney

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