Can you get lymphedema with only one node removed?

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coffeelatte
coffeelatte Member Posts: 209
edited June 2014 in Lymphedema

I have had swelling and pain in the area where my sentinel node was removed and I am wondering if it could be lymphedema.  I have had swelling and pain in that lymph node area since the double mastectomy surgery.  I asked my breast surgeon if I could be developing lymphedema at a follow up appointment two weeks after surgery and he said absolutely not because I had just one node removed.  However, at my one month follow up he sent me to see a PT for a few sessions because he said I did appear to be very swollen on the cancer side.  I felt better after PT but it has gotten bad since then.  The physical therapist did not know a lot about lymphedema so she basically helped me get my arm mobility back on the cancer side.  Then last week I finally made it to the grocery after digging out of a big snow.  The cart was hard to push to my car because of all the snow still in the parking lot.  It hurt to push the cart even though I was careful.  As I drove home I could feel my arm getting tight in my coat. It was really swollen in my arm and hand when I got home. That was last Thursday and I have been in pain and swollen ever since.  Could this be lymphedema even though the BS said no way?

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  • RobinLK
    RobinLK Member Posts: 840
    edited January 2014

    It is possible to get lymphedema with only one node removed. Call your BS and ask for a referral to a lymphedema specialist. You should be seen for the swelling, I am going to look for a couple of links for you to check out. 

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  • RobinLK
    RobinLK Member Posts: 840
    edited January 2014

    http://community.breastcancer.org/forum/64/topic/7...

    Good info right from this forum. 

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited January 2014

    You absolutely can get lymphedema  - I only had one node removed and have it.  Please start looking for a lymphedema specialist right away.  Also, please check out the website  www.stepup-speakout.org for more information.

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  • Kicks
    Kicks Member Posts: 4,131
    edited January 2014

    You need to see a Certified LymphEdema Therapist! 

    Lymphedema is not exclusive to breast cancer.  LE can happen after ANY surgery or traumatic injury - nodes do not have to be removed to develope LE.  I have a friend who deals with more LE issues than I do with 19 nodes removed, in her lower leg after non-invasive knee surgery.

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  • mnmbeck
    mnmbeck Member Posts: 313
    edited January 2014

    You'll find many women on this site who had only 1 node removed and have lymphedema.  It absolutely can (and does) happen.  The best advice is above...find a certified lymphedema therapist...not just an OT, PT or surgeon who says they may know something about it.  There's so much misinformation out there.  I am just figuring this out, too.  I had 4 nodes removed.  She meant to remove just one, but they were 'stuck together.'  I have LE.  Go get seen right away!

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited January 2014

    I know a woman with lymphedema who has no cancer whatsoever. It's a moderate case requiring a compression sleeve on her leg and daily wrapping, no exceptions, so you see you don't need to remove nodes to develope it, although this is a rare case. Definitely see  Lymphedema therapist.  They know so very much and can help you with massage and exercises to manage it.  Good luck!

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  • carol57
    carol57 Member Posts: 3,567
    edited January 2014

    One of the well regarded LE researchers said once that some of us are born with lymphatic systems like super highways, but others get country lanes.  So when there's node removal, scarring, radiation, chemo, etc., some lymphatic systems are robust enough to take the insult in stride, but others are overwhelmed.  My mother had every stinkin' node removed with her mx and 43 years later never got LE.  I had 5 nodes removed, and here I am.  Binney, who helps us a lot here with her amazing expertise, has bilateral LE, with nodes removed on one side, but none on the other.  So yes, it's indeed possible to get LE with no nodes out!

    Having said that, at least one good study has shown that an awful lot of early, post-surgical but LE-type swelling reverses itself during the first year after surgery. That Australian study concluded that some swelling is the result of taxane-based chemo that ends sometime after the end of the chemo treatment, and that other swelling often responds and reverses with some careful exercise. They observed that exercise helps move lymph and they concluded that exercise should be considered as standard treatment after breast cancer surgery.  Anyone who would like to see that study please PM me, and I'll get it to you.  

    The conclusion I draw is that it's important to view post-surgical swelling in the arm, armpit, and truncal areas (i.e. LE-like swelling) as an important signal that it's time to get evaluated, treated, and to take action such as taking LE risk-reduction behaviors seriously. Dr. Jane Armer finds that early post-surgical swelling is a strong predictor of subsequent serious LE, so to blow it off is unconscionable.  Coffeelatte, if you need studies to show your BS, PM me.  And as everyone else said, it's critical that you find a qualified LE therapist to evaluate what's going on.  Here's a link to the stepup site that helps you navigate to a good therapist:

    http://stepup-speakout.org/Finding_a_Qualified_Lym...

    Coffee, best wishes as you try to get the answers you need, and please keep us posted on what you do and learn.

    Carol

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited January 2014

    coffeelatte.  Yup, not only can you get LE from one missing node but my friend is very overweight and henceforth has very bad pitting edema in her lower-legs and has all her nodes. I  gently prodded her to get it looked at but she will only wear compression  when she flys. 

    As for doctors...a lot of us girls have discovered that they are NOT god....They don't know much about LE. Mine laughed me right out of the office and said I would never get it.  Guess he's eating dirt right now because I do indeed have LE. (Yes, I am resentful to his comment seeing that he couldn't claim ignorance as he must have known what LE was in order to make the comment.

    Sure sounds like you have LE with all that hand and arm swelling.

    Anyhow the good news is you caught it early and if you treat it then it will be better than leaving it.

    Stick with us and ask any questions in order to quash the nasty LE beast.

    Getting checked out by a certified LE therapist is smart. She will teach you to care for it. Then you can get on with life.  We are here for you.

    For now:

    Elevate your arm above your heart with pillows and rest, rest, rest it. Drink tons of water and don't lift anything heavy. Carry purse on other arm. Take deep belly breaths,and if comfy raise that bad arm straight in the air and pump slowly 25 times if you can every so often. Less if you can't. All this will help until you are evaluated.

    Sending Binney's virtual brownies your way. All that chocolate flavour will make anything better. ;)

    Thanks Carol for weighing in. You wrote while I was editing.  :) I really hope it's surgical swelling. 

    Coffeelatte, Just reading your post again., Would you give us dates when you surgery was? Was it recent or long time ago. I see you have joined in 2009 and I am thinking maybe your surgery was a while back.

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  • coffeelatte
    coffeelatte Member Posts: 209
    edited January 2014

    I have read and reread the replies and I can't thank you all enough for the help.  I hope my tag line shows up with this post as I see it did not show when I started this thread.  I had surgery August 13, 2013.  I had a double mastectomy, cancer on the left, 1.5 cm, DCIS, one node removed.  I joined BCO in 2009 because I had a lumpectomy on the right breast which turned out to be non-cancerous.  My right breast was cut from one side to the other with that surgery but I was so lucky and never had a problem.  I know my left side was compromised going into the surgery because I have had two ulnar nerve surgeries on my left arm which has left me with a lot of scar tissue and an arm that hurts and is heavy feeling most of the time.  I have had to prop my left arm to keep it supported for years, but I have not experienced swelling quite like this.  I can visually see and feel a lot of swelling above the incision on the left side right where the node was removed.  The right side (non-cancer) does not have any swelling as I can see my ribs.  I noticed I can not wear the prosthesis (very light weight) in my bra because it hurts just having something pressing on the left side of my chest so I just place a little pillow stuffing in those pockets to keep it lightweight.

    I did the arm pump in the air just as hugz recommended and it did take the swelling down temporarily in my hand.  I also looked at my old printouts from the hospital that they give out to prevent lymphedema and I tried the hand massage over the node area and I could see a reduction in that pocket of swelling after doing it three times very slow and gentle. I was stunned to see the swelling go down just by doing such a simple thing.  The pain in that area feels better since I did that massage. Amazing. I am also in the process of locating a LE specialist so that I can get some further help. Does anyone here do the light manual massage over the node or armpit area?

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  • beatrice00
    beatrice00 Member Posts: 103
    edited January 2014

    I had one node removed and have it. 

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  • mnmbeck
    mnmbeck Member Posts: 313
    edited January 2014

    coffee.....it is fantastic that you came here to get the good information from all these fantastic ladies, and like me, it sounds like you are trying to get information on your own.  But again....manual lymph drainage (massage) is best taught by a CLT.  Mine watches me (and usually finds some little thing I am not doing quite right) every time I go.  She also does some stuff that I can't do (like on my back, etc).  She even has me do HER arm to make sure that I'm doing the right pressure, etc.  It's not obvious (in my opinion) how to do it right, even though it seems so blasted simple! 

    Hopefully, when you get some good training, your LE will continue to respond the way you are seeing it respond by trying it!  I am encouraged by the "one year" thing that carol mentioned.  I know 3 people who have had lower extremity LE.  2 of them "resolved" after the first year (not sure if that is the right word).  One of them even went on a 76 mile hike in the mountains of New Mexico.  She DID have swelling there, but it resolved quickly.  I find that SO encouraging.  Also, my CLT (and others here) said that many women find improved symptoms after their exchange surgery.  Again, no guarantee, but it gives me  hope! 

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