Could this be Lymphedema starting?

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LauraW68
LauraW68 Member Posts: 100
edited November 2014 in Lymphedema

I had SNB and axillary nodes removed in my right side when I had my BMX on October 24th.  There were a total of 15 lymph nodes(including 2 Sentinel nodes removed (3 tested positive for cancer). 

My right arm has been sore ever since surgery but within the last few days more so.  The underside of my bicep near my armpit is what hurts. There's no incisions on my arm or in my armpit but hubby said doc could have just gone up in there and pull the lymph node pad out since my arms were splayed out.  Anyway, it looks a little swelled to me compared to the left arm, my shirt sleeve feels a little tighter on it than the left, and it's hard to explain how it feels but it's sore like it's been rubbing against something type sore.  Hope that made sense.

My right arm stays colder now which is probably from having nerve endings cut too.  I noticed that if it's cold outside my right arm aches and feels like it gets colder faster than the rest of my body.    Riding in the vehicle with my right arm against the door just freezes it. I have to keep something between me and the door.

Could this be lymphedema starting or is just common after having lymph nodes removed?

I was thinking of calling the doctor but not sure whether to call my surgical oncologist or plastic surgeon's office.   

Any help is appreciated.

Comments

  • TNBCnoprimarysite
    TNBCnoprimarysite Member Posts: 2
    edited November 2014

    Hi LauraW68,

    I had 16 nodes out as well—one for the sentinel biopsy, the other 15 during partial BMX in May  2014. I've done all the stretches, lymphatic exercise classes, wore heavy gloves for doing dishes, everything I was told in the lymphadema seminar I took.

    Today I saw my oncology surgeon, and he said my latest mammogram was clear (yay) but when I told him about all the pain in my right hand, arm, armpit, and was it the result of the surgeries or the radiation, he said let me see both your arms, and said, "Oh, you have lymphadema."

    I have examined these stupid arms every night, but I guess that's the problem--we look at them all the time and become blind to the changes the doc sees in a second.

    My advice: whip to the doc as fast as you can and get a referral to a lymphadema clinic—they are the people to help us. Catching it early is important, so pick up the phone.

    Sincerely,

    Jacquelyn 

  • friendships
    friendships Member Posts: 47
    edited November 2014

    Jacquelyn's post is excellent, in my opinion. I think a call is prudent too. I had a slow recovery from a lymph node dissection. My under arm to my elbow was numb, my arm hurt and if anyone grabbed my arm, the pain was intense. I couldn't turn a steering wheel easily for quite some time and couldn't lift much of anything.

    Down the road as I healed, sometimes I experienced an achy, somewhat numb sensation in the arm that I described as "I blew out my arm". I rested it on an elevated pillow until it felt normal and then took it easy with the arm. I felt like it was my body's warning signal and encourage you to take it easy too and follow the advice from your doctor.

    Now years later, I feel great, work out with weights, run, row etc but still don't get blood draws, shots or blood pressure taken on that arm. Not all, but quite a bit of feeling has returned to the underarm too. It looks like you are not even 2 weeks out from surgery. I "babied" my arm for months and only gently did the arm exercises, as I remember, just because it felt like that was what I needed to do. I sincerely hope you don't have lymphedema but encourage you take the precautions as you heal.

  • Binney4
    Binney4 Member Posts: 8,609
    edited November 2014

    Laura, hello,

    Some of the symptoms you describe could be indications of lymphedema starting, especially the tighter sleeve, slight swelling, and "feeling funny." The feeling that it's been rubbed might also relate to lymphedema, but more likely that's post-surgical stuff that will improve with time. If you haven't already seen a lymphedema therapist, now is the time. S/he will be able to evaluate your situation and either give you personalized risk reduction strategies or, if s/he finds some evidence of lymphedema, begin treatment. The good news is, the earlier treatment starts the easier it will be to control and manage on-going. 

    Here's what you need to know to find a well-qualified lymphedema therapist near you:
    http://www.stepup-speakout.org/Finding_a_Qualified...

    And here are some steps you can take now to help reduce any swelling and discomfort until you can see a therapist:
    http://www.stepup-speakout.org/How_You_Can_Cope_wi...

    Hope some of that helps. Be well!
    Binney

  • LauraW68
    LauraW68 Member Posts: 100
    edited November 2014

    I made a call to the PS's office. His nurse called me back and said what I was experiencing was normal being as I am just 13 days post-op today. The tightness and sore in my chest she said is normal from the fill of the TE's on Tuesday.   I just know it doesn't feel right to me. I  feel stuffed if that makes sense. Like fluid built up. 

    I see the PS again on Tuesday and I'll mention it again if it's not better. He is supposed to pull the last two remaining drains then and probably give me another TE fill.

    My Surgical oncologist is out of town until Monday.  I am not scheduled to see my Surgical Oncologist again until she does
    the port on the 21st. I may see if I can get in to see here before then
    though. After that, I am not scheduled to see here again until February.

    Neither of them has mentioned a lymphedema therapist.

    Thank you all for the info. Greatly appreciated!

  • glennie19
    glennie19 Member Posts: 6,398
    edited November 2014


    Laura, even if it is not LE,, it's not a bad idea to get a referral to a LE therapist, so that he/she has baseline measurements for you. That way, if things flare up in the future,, you have baseline numbers.

  • proudtospin
    proudtospin Member Posts: 5,972
    edited November 2014

    Laura, you just had advise from the best person here...Binney, listen to her and get into see someone on Mon to review you.

    I did, I have some LEin my left side but it is manageable and I work with a trainer who gets it, he keeps me out of trouble!!

    bers

  • LauraW68
    LauraW68 Member Posts: 100
    edited November 2014

    Thank you all!

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

    Laura, I'll chime in to add my support for a lymphedema evaluation/education session with a certified LE therapist. The more you learn, the more likely you'll be tuned in to subtle signs and signals that LE might be brewing later.  

    I have LE after losing just a few nodes in SNB, but what I want to share with you is the odd sensations I had for a few months after my bmx/diep recon.  My recon and yours are quite different, but in both our cases, there sure was a lot of tissue rearrangement, to say the least!  And I remember in the first few months following surgery that I had the strangest feeling of being swollen by inches and inches--as you said, a 'stuffed' feeling--but visually, there was nothing.  In the end, I did get LE, and fortunately it's pretty mild and limited to my upper arm and some little spots on my side and on my back.  But the areas where I had the stuffed feeling--my foobs and just around them--no LE.  So I think the surgery, including the recon work, triggers sensations that are simply alien to us, and it's incredibly hard to NOT imagine that something like LE is brewing.  It's so smart to get educated about LE signs and symptoms, because with your surgical history you've got a real risk of getting it.  But so soon after surgery, I'm thinking you can hang onto some pretty good optimism that what you're feeling is annoying, maybe alarming...but likely temporary.

    Best wishes for a continued recovery of the no-drama variety, and especially that LE leaves you alone!

    Carol

  • LauraW68
    LauraW68 Member Posts: 100
    edited November 2014

    Thank you, Carol!

  • LvinAZ44
    LvinAZ44 Member Posts: 213
    edited November 2014

    Hello all, I have beenlucky not to have had to deal with LE since mid 2011 however it is bacccckkkk. It started 4 days ago, I felt elbow pain and then fluid on my elbow. My arm is slightly swollen and sore. I can relate to the "rubbing against something sore" pain, that is what it feels like under my arm near the pit. I feel like my breast has also started to swell. Went to see my doctors nurse yesterday and she said no cause for alarm, wrote me a script for a compression sleeve as I have misplaced my first one. I also feel like I am getting a flu or something? Not sure if that is related, but I just feel blah. I may get an ultrasound just to put my mind at ease. I am hoping that this is a fluke thing and not cause for alarm since I am trying to make it to my 5 year mark or the beginning of it. LE stinks!!

  • Binney4
    Binney4 Member Posts: 8,609
    edited November 2014

    Hello, Cheryl!

    I'm with you in hoping this is just a momentary blip in an otherwise smooth sail through the LE world.

    But just so you're aware, sudden new swelling and flu-like symptoms are both symptoms of cellulitis, so WATCH CAREFULLY and ACT QUICKLY if any further symptoms develop, because cellulitis is a serious emergency. Here's more information about what to watch for:

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

    Do NOT let the holiday weekend deter you from getting to Critical Care or the ER promptly if this should develop further.

    And on the other hand, another source of new swelling can be blood clots, for which I sure agree an ultrasound would be a good idea.

    Do you have a good LE therapist? If not, now's the time to find one. A prescription for a sleeve (and you need hand protection with that as well) is NOT the treatment for LE. An appointment soon with your therapist is essential for getting this back in control and moving forward with the fewest problems possible. Here's how to find a well-trained therapist near you in case you don't have one:

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

    What a downer to be dealing with at this very Thankful time of year! Rest up, stay really well hydrated, pause now and then for a few deep, abdominal breaths, and…well…Happy Thanksgiving anyway!

    Please keep us posted! Gentle hugs,
    Binney

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