Lymphedema above clavicle and neck?

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Manuella
Manuella Member Posts: 50
edited August 2018 in Lymphedema

Hi everyone, I had 17 nodes removed in Nov 2016 (single mastectomy) and just finished radiation in March 2018 for a local recurrence. I’ve been having problems with mild LE in my arm, back and sides (not the breast), I wear my sleeve/glove and do MLD every day, I’m also wearing an underarmour tshirt during the time I’m home/sleep). On Saturday, I noticed a spongy swelling above my clavicle -breast cancer side. The swelling runs all the way above the clavicle. I’m now noticing that I have very slight swelling on the left side of the neck.

I saw my oncology nurse this morning and she says she cannot feel any lymphnodes and she thinks it’s LE swelling. Is this possible? I’ve googled and can only find people with neck/face cancers with LE there (no anecdotal evidence of Bc patients). I’m freaking out about the possibility of the cancer being back and also of having LE there too (though I’ll take LE over the cancer any day!). I have an appt with my LE therapist in the morning but wanted to hear thoughta/annecdotal evidence from you ladies who I believe know more about LE than all my doctors and even therapist put together.

(Btw, I have 2 x 6 hour flights next week and a bunch or flights, inc 2 x 10 hour flights in August and I am now terrified my neck/face will blow up or something).


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  • Denise-G
    Denise-G Member Posts: 1,777
    edited June 2018

    Hoping someone joins in here soon with some info. I have no answers for you, but I do know in most parts of the country it is very hot right now and LE is always a problem in sweltering weather. I had some minor swelling in my neck and chest after rads, but it toned down rather quickly. It then moved to more truncal lymphedema. Through the years it settled in my arm where I had 14 nodes removed and I rarely get the other areas swollen now. So my LE certainly moved around over the course of 6 years.

    I hope that brings some sort of encouragement. Hopefully, someone will have some more info for you!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2018

    Manuella, hello,

    I'm so sorry for this crummy new development. Check in with your oncologist to rule out a recurrence, of course, but it is certainly possible to develop neck LE following breast cancer treatment, especially with rads (though it's fortunately rare). it's also rare for any of us to say we're hoping this is LE, but in this case we'll look forward with you to finding that's the answer!

    And just so you know, neck LE is treatable and controllable. Hang in there! Do some good chocolate while you wait for answers, and please do let us know what you discover.

    Gentle hugs,
    Binney

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2018

    Manuella, It just occurred to me that since you're already familiar with how to do MLD yourself, you might want to do some head/neck MLD as well. Here are easy-to-follow directions. Just remember the touch is VERY light and slow:

    https://ahc.aurorahealthcare.org/fywb/x23169.pdf

    Hugs,
    Binney

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  • Manuella
    Manuella Member Posts: 50
    edited June 2018

    Thanks Binney and Denise! You ladies rock! LE therapist said she doesn’t think it’s LE (though she has seen people with LE above clavicle and neck as a SE for BC). My left foot is swelling too (it happens on hot days). Due to an old groin injury she says we need to keep an eye on it as my lymph system is clearly slugish.

    My breast surgeon has no idea what the swelling could be. She doesn’t feel any swollen nodes but will send me in for a Pet CT scan. Appt is Thurs, wish me luck! Will keep you ladies posted.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited June 2018

    Manuella - do keep us posted and good luck with your scans! Sending a hug!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2018

    Ah, Manuella, really glad the PET scan is scheduled so promptly, because waiting for answers is its own kind of torture! Looking forward with you to only good news, and a clear direction for solving the problem!

    By the way, over time I've developed LE in my abdomen and one lower leg as well. My LE therapist attributes it to a basically inadequate lymph system that hasn't handled the insult of BC treatment very well, plus the fact that it is, after all, a system so everything's connected. (Sigh!)

    Hugs, chocolate,
    Binney

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  • LAstar
    LAstar Member Posts: 1,574
    edited June 2018

    I have mild LE in my left arm, but I do notice swelling above my clavicle. That is how I know I need to do drainage massage. I compare my left (cancer side) clavicle to my right. Sometimes I can hardly feel my left clavicle compared to the right.

    I hope you get good news soon!

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  • AnnE16
    AnnE16 Member Posts: 241
    edited July 2018

    binney4...I have been noticing lymphadema or swelling in my abdomen and one of my legs too. What do you use to deal with the abdominal lymphadema? 

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  • AnnE16
    AnnE16 Member Posts: 241
    edited July 2018

    Manuella,

    Ironically I have swelling above my left clavicle which happens to be non cancer side. We are thinking that after all these years with pushing the fluid from the right to the left...the left (good side) is overwhelmed so now she is sending my lymphatics in another direction. Great that you are getting a scan so you can ease your mind! This awful lymphadema that no doctor ever told me about as a risk factor really sucks!!!

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  • Manuella
    Manuella Member Posts: 50
    edited July 2018

    Scans came back clear! It seems that the skin above my clavicle is shrinking/being pulled down from radiation and that’s why it’s bulging above the clavicle. Thanks everyone

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  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2018

    Hi, smiley,

    Abdominal LE has it's own Manual Lymph Drainage (MLD) routine, which I find really effective. You'll need a well-trained LE therapist (if you have one--do you?) to teach you the steps. It starts with clearing the neck and clavicle area, just like the arm/trunk MLD (our lymph system is a system, after all, so it's all linked together). It also involves clearing the groin area nodes. It takes me only a few minutes a day, and it's actually relaxing, so a good thing to do in bed before sleep. I use a WearEase Slimmer for chest/back compression, and it's long enough to provide the abdominal compression I need. You could also use other compression options, like for instance sports shorts such as bike racers wear, but they're too hot and constrictive for my taste. My one leg is also affected, but only the lower leg, so I use a knee-high compression stocking in a 20/30 compression range, which I order from BrightLifeDirect (they currently have a buy 3/get 4 sale going on, so it's time for me to reorder!) Compared to my bilateral arm LE it's a lot less stressful, but it does create problems for where to do blood draws and IVs, since I only have one "good" limb left. Sigh!

    Do make an appointment with an experienced LE therapist for measurements, evaluation, and individualized help with this new development.

    And, hey--as far as I'm concerned, chocolate is definitely in order!

    Gentle hugs,
    Binney

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  • Sue2690
    Sue2690 Member Posts: 43
    edited August 2018

    I have this too.

    Cancer was on right side 6 years ago, and about a year and a half ago I developed swelling above my left clavicle. Scared the daylights out of me, but after several tests and scans, and the passage of time, we're now sure it isn't cancer. "Just" lymphedema.

    I do see a massage therapist who specializes in LE. It does help some. What helped the most over the past year is losing about 5 pounds, but then I gained the weight back and the swelling returned. Time to lose it again.

    I really love that we have this board to share our experiences!

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  • LAstar
    LAstar Member Posts: 1,574
    edited August 2018

    Thanks, sue -- that's another good reason to lose my extra pounds!

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