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Topic: Lymphedema above clavicle and neck?

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Jun 18, 2018 03:16PM

Manuella wrote:

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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Jun 18, 2018 06:02PM Denise-G wrote:

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!

www.denise4health.info my BC Blog with over 200 informative posts - stop by and say hello! Myself, my mom, and sister were all diagnosed with BC within 3 years. What a ride! Dx 10/10/2011, IDC, Left, 6cm+, Stage IIIA, Grade 2, 9/14 nodes, ER+/PR+, HER2+ (FISH) Surgery 11/22/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 12/26/2011 AC + T (Taxol) Targeted Therapy 2/27/2012 Herceptin (trastuzumab) Hormonal Therapy 10/10/2012 Arimidex (anastrozole)
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Jun 18, 2018 06:13PM - edited Jun 18, 2018 06:15PM by Binney4

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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Jun 19, 2018 01:39PM Binney4 wrote:

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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Jun 19, 2018 03:27PM Manuella wrote:

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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Jun 19, 2018 07:23PM Denise-G wrote:

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

www.denise4health.info my BC Blog with over 200 informative posts - stop by and say hello! Myself, my mom, and sister were all diagnosed with BC within 3 years. What a ride! Dx 10/10/2011, IDC, Left, 6cm+, Stage IIIA, Grade 2, 9/14 nodes, ER+/PR+, HER2+ (FISH) Surgery 11/22/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 12/26/2011 AC + T (Taxol) Targeted Therapy 2/27/2012 Herceptin (trastuzumab) Hormonal Therapy 10/10/2012 Arimidex (anastrozole)
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Jun 20, 2018 02:16PM Binney4 wrote:

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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Jun 26, 2018 04:09PM LAstar wrote:

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!

Dx 3/5/2012, DCIS, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER+/PR- Surgery 4/6/2012 Lumpectomy: Left Surgery 5/4/2012 Lumpectomy: Left Surgery 6/19/2012 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): SGAP flap/hip flap; Reconstruction (right): SGAP flap/hip flap Surgery 10/5/2012 Reconstruction (left): SGAP flap/hip flap; Reconstruction (right): SGAP flap/hip flap Surgery 1/26/2015 Reconstruction (left): DIEP flap
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Jul 15, 2018 11:41PM smiley2 wrote:

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? 

Stage 4; 2/16 nodes; ER+/PR+; Her2-
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Jul 15, 2018 11:46PM smiley2 wrote:

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!!!

Stage 4; 2/16 nodes; ER+/PR+; Her2-
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Jul 25, 2018 04:17PM Manuella wrote:

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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Jul 25, 2018 06:30PM Binney4 wrote:

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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Aug 20, 2018 12:15PM Sue2690 wrote:

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!

Dx 3/20/2012, IDC, Right, 4cm, Stage IIIB, Grade 3, ER+/PR-, HER2+ Chemotherapy 4/10/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 7/3/2012 Herceptin (trastuzumab) Surgery 10/5/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 11/21/2012 Breast, Lymph nodes
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Aug 21, 2018 10:20PM LAstar wrote:

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

Dx 3/5/2012, DCIS, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER+/PR- Surgery 4/6/2012 Lumpectomy: Left Surgery 5/4/2012 Lumpectomy: Left Surgery 6/19/2012 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): SGAP flap/hip flap; Reconstruction (right): SGAP flap/hip flap Surgery 10/5/2012 Reconstruction (left): SGAP flap/hip flap; Reconstruction (right): SGAP flap/hip flap Surgery 1/26/2015 Reconstruction (left): DIEP flap

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