Truncal LE spreading to other side.

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paintThesky
paintThesky Member Posts: 56
edited May 2016 in Lymphedema

I have truncal LE. It started about a year ago under my right arm, and then quickly spread to my right breast area, and right upper back. The summer was a painful time, and when summer ended and the weather got cooler I got better. I am now noticing some swelling on the other side of chest (unaffected side). I have some burning and tingling sensations much like the way it felt when it started on my right side. It's worse at days end, and this past weekend we traveled to the mountains and I was pretty miserable. It felt like I was carrying around a weight across my chest. I recently had my yearly mammogram, and it was good. I have an appointment to see my breast specialist this Wednesday to have her take a look. Has anyone else had LE spread to the other breast area?

Comments

  • TripleP
    TripleP Member Posts: 21
    edited March 2016

    Have no help or response for you, and actually wanted to pick your brain. I think you said your truncated lymphedema started under your arm. I have made several plane trips lately and recently came home sick and have been pretty sedentary for the last 2 1/2 weeks. The other day I noticed that my under arm and side on the surgery/radiation side was kind of puffy. Additionally my favorite bra was fitting tight so I switched to my loosest one. Is this how yours first started? There is no pain to speak of just a bit of discomfort. I did not know that LE could be truncal. When I read a post about it, I wondered if that is what is going on with me. Sure would appreciate your input

  • glennie19
    glennie19 Member Posts: 6,398
    edited March 2016

    PaintThesky,, I have not,, but I seem to recall that it has happened to someone who posts on here. Hang on,, hopefully someone will respond.

    TripleP: Yes, LE can be truncal,, that's where most of mine is. Mine didn't hurt,, has never really hurt,,, it is just this discomfort,,, and a feeling of having a wet washcloth stuck to my chest. If your bra is fitting tight and your underarm area is puffy, I would recommend that you see your doctor,, and get a referral to a certified LE therapist. Best of luck.

  • TripleP
    TripleP Member Posts: 21
    edited March 2016

    glennie19, thanks for responding! I did call my radiologist and made an appointment for next week. I was just hoping I was not imagining things. You have reinforced my view that I should get this checked out. Thanks again for the reply

  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2016

    PaintTheSky, somehow it looks like we all missed your post last month. I sure hope you've gotten some help and answers from your medical team by now. I have truncal LE on both sides, but then I had bilateral surgery, which it looks like you didn't. LE can spread, as the ability of the lymph system to transport lymph fluid can be impacted by LE in any area of the body. But it's pretty rare without some further trauma, and it usually takes a long time (like many years) for that to happen without some new injury or surgery to cause it. Do let us know how you're doing, please!

    TripleP, here's more information about truncal lymphedema:

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

    Any member of your healthcare team can write you a referral to a well-qualified lymphedema therapist. Call before you go and make sure the one you're seeing has experience with truncal LE. Please keep us posted.

    Gentle hugs,
    Binney



  • paintThesky
    paintThesky Member Posts: 56
    edited March 2016

    It's hard to know where to start. This past few months has been strange with new LE symptoms. Binney: I have had trauma to the left side. My entire left artery was stripped out during my treatments 15 years ago. It got infected, and the wound had to lay open for a couple weeks with a sponge sucking out infection. I spent a couple weeks in a hospital hooked up to that machine. The wound was very deep and my scar on that side reaches from above my wrist all the way down to my hand. They said I could have lost that arm. It took months to get over those surgeries, and it happened because I did not have a port. All of my treatments and antibiotics went into that arm, and to make matters worse I spent time in the hospital during treatments for pneumonia. It is almost impossible to get a blood pressure reading on that side. The breast cancer was on my right side, and my left arm has no main artery.

    Triple P: The puffiness under my arm has never gone away. I first noticed it about a year ago. It's uncomfortable at times, and now my hand is really bothering me. The warm weather is the worst for me, and this year in the southeast we are having an early spring, so the swelling is already getting worse! I have discomfort across my chest on both sides now. As far as I am concerned LE is painful. I get pangs of pain, burning, and fullness too. One year ago I had a diagnostic mamo and ultra sound to rule out a breast cancer recurrence. Sometimes I am not aware of the puffy underarm, and other times it feels fuller. Best wishes to you in getting to the bottom of the puffiness!

    Since I posted earlier in Feb. I have been to my gyn doc and she sent me for a diagnostic mamo and ultra sound on the left side to make sure I don't have breast cancer there. Now she wants me to see a cardiologist to rule out heart problems. I honestly don't think that it's my heart. I believe I am plagued with LE and also neuropathy. I haven't been to therapy in a while, and will probably start again soon, as the weather here is getting hot again.


  • LymphActivist
    LymphActivist Member Posts: 64
    edited March 2016

    paintThesky: Truncal lymphedema is a relatively un-recognized result of breast surgery and radiotherapy. Any disruption of the lymphatic drainage of the breast and upper torso, (e.g. by surgery, radiation or infection) can result in a build-up of fluids (lymph stasis causing lymphedema) in those regions. If not drained, the swelling can spread. Draining of this interstitial fluid, i.e. fluid in the tissue between the cells, is usually performed by a specially trained therapist, trained in the specialty called "manual lymph drainage" or MLD. Having first ruled out cancer, heart problems, infection and other medical causes, you should be seen by a trained and certified lymphedema therapist for evaluation and possible treatment. You do not want to allow the swelling to go, since there are tissue changes that take place that will cause it to get worse and result in permanent tissue changes that are much more difficult to treat. The therapist can also teach you self-MLD techniques which can slow down fluid accumulation, as can wearing of truncal compression garments as prescribed by your lymphedema therapist.

    For further information see http://www.lymphactivist.org/breast_lymphedema_for...

  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2016

    paintThesky, definitely see a well-qualified lymphedema therapist, because with that trauma history you could for sure expect your LE to affect that side as well. Have you learned self-MLD? Wrapping is not used for truncal LE, but there are several kinds of chest compression bras, camis, and chip pads to help with the swelling. I agree with you about the pain of truncal LE, but reducing and controlling the swelling also controls the pain. See the links at the bottom of this page for some ideas of garments for helping with truncal LE:

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

    Please do let us know what you discover. Gentle hugs,
    Binney


  • SusanSnowFlake
    SusanSnowFlake Member Posts: 165
    edited March 2016

    @paintthesky (Love the name) I hope they get to a diagnosis soon, even with a diagnosis that isn't good it's better to know what your dealing with, then listen to Doc's guessing. I have truncal LE that is also in my upper arm. It started with a puff ball, soft like a marshmallow, in the front of my arm pit, directly over the scar from node removal It then moved to my breast and now seems to be in my midriff, my upper arm and maybe my tummy region, that could also be due to a local grocery that is now making gluten free cup cakes. I have thought on a few occasions that something was amiss on the other side, it was fleeting thought, but now I'm wondering.

    Keep us informed and I'll hope the best for you!

  • paintThesky
    paintThesky Member Posts: 56
    edited March 2016

    Another update. I go to the cardiologist in mid April. I'll also go to the breast doc (gyn) in April. Thank you all for the responses. Binney: I have some compression camis that I wear on occasion. They make me miserably hot though. It's like you trade one discomfort for another. Oh well! I also want to say, I had a rash on the left breast several months ago. I went to a dermatologist, because it freaked me out!!!! Anyhow, I asked him if LE could spread to the other side, and he said yes, there's no stop sign at mid chest saying "hey lymph fluid you have to stop here!". That rash went away, and then in a couple months following in the dead of winter I got poison oak on the left side breast, back, arms. (we live in the woods and burn wood in a wood stove, so poison oak is a year round threat) My mind has been assaulted with worry these past months, but I have stayed on top of it! My first grandchild is on his way, so I need to get better! Best wishes to all of you! :)

  • glennie19
    glennie19 Member Posts: 6,398
    edited March 2016

    PaintTheSky: congrats on the grandchild! And I love that answer,,, there is no stop sign mid-chest! Good information to know that it can spread to the non-LE side. UGH on the poison oak.

  • funthing42
    funthing42 Member Posts: 418
    edited March 2016

    Hi everyone. I have a question probably a ridiculous one. Can lymph edema be picked up on a pet scan as a positive finding?

    I went through radiation x2 to the same said once 2009 and then 2015.

    I have no breast but my tumor markers went up and pet scan showed positive nodes on the opposite side .

  • funthing42
    funthing42 Member Posts: 418
    edited March 2016

    Hi everyone. I have a question probably a ridiculous one. Can lymph edema be picked up on a pet scan as a positive finding?

    I went through radiation x2 to the same said once 2009 and then 2015.

    I have no breast but my tumor markers went up and pet scan showed positive nodes on the opposite side .

  • paintThesky
    paintThesky Member Posts: 56
    edited May 2016

    After some months, and 2 trips to my gyn, and having all the heart tests completed. Ultra sound ruled out breast cancer, along with diagnostic mammogram. The heart tests showed no heart issues. My gyn says she doesn't see anything amiss on the breast, and doesn't see or feel anything either. She'd like to refer me to a breast specialist she knows, but my insurance won't pay for me to see that particular doctor. So we're in limbo for the moment. As the weather gets warmer here in the south east, my swelling in the breast on the unaffected side is getting worse. So now my breasts on both sides are affected with swelling and pain, both arms, and I can feel it in my back. I am in a great deal of pain on days when it's hot and muggy, so I know I can't go through the summer like this. At this point I am thinking about either going straight to a therapist, I can get a prescription from my regular doctor, or going to an internist. I am not sure what I am going to do. I inserted the photo, so you can see the trauma to the unaffected side. That was 15 years ago! That dark area is were the skin was laid open and a sponge inserted to drain infection from sepsis. Now here we are 15 years later, and this mess has come back to haunt me.

    image

  • doxie
    doxie Member Posts: 1,455
    edited May 2016

    I hope you find the help you need. I wish I could otherwise help you with finding a solution. My only suggestion is to try move the fluid to outer lymph nodes manually. This has helped my breast LE.

  • Binney4
    Binney4 Member Posts: 8,609
    edited May 2016

    PaintTheSky, if it were me I'd want a well-trained and experienced LE therapist to do a complete evaluation at this point. They're the ones trained to recognize LE as well as address it. Now that you've ruled out the more immediate concerns, LE is the option to consider, and you want to get on it right away before summer hits full on. With the trauma to the left side that you describe, certainly LE is a likely outcome. When LE is bilateral the Manual Lymph Drainage patten is different than when there's only one side involved. The fluid must be moved downward toward the abdomen/groin, rather than across to the opposite side. It's important to clear all lymph nodes in the groin and abdomen beforehand, so the fluid doesn't simply gather there. So, a new routine to learn, but knowing how to manage will keep you much more comfortable through the humid months.

    If a compression cami is too much for you, you might try a compression bra instead--possibly a bit cooler. I prefer the cami, even through the summer, since I'm bilateral and want to keep the fluid moving downward.

    Hope some of that makes sense, and that you'll soon have answers and all the help you need. Please keep us posted.

    Gentle hugs,
    Binney

  • paintThesky
    paintThesky Member Posts: 56
    edited May 2016

    Thanks for the advice. I live in a rural area, and I have a feeling that finding a therapist is going to be hard, but I have to try! Binney you spoke of a compression bra. Do you have one in mind? I tried a couple of those, and didn't much care for the ones I tried. Perhaps there is another one out there that would work for me. I have that "go" something or another t-shirt, and I like it well enough. I also have 2 compression cami's, but they cause a bulge under my arm pits. Thanks again and have a blessed weekend everyone!

  • Binney4
    Binney4 Member Posts: 8,609
    edited May 2016

    Hi, pTs,

    Here's a whole array of compression bras. (I've used the WearEase and like it, but I need a cami in order to move fluid downward):

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

    And here's information on finding a well-trained lymphedema therapist:

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

    Sure hope some of that helps. Please keep us posted!

    Gentle hugs,
    Binney

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