could this be LE?

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MicheleS
MicheleS Member Posts: 937
edited June 2014 in Lymphedema

Hi everyone!

I've been having some issues post-recon on my BC side.  I had a bilat and delayed recon with implants.  The rt side is fine- no issues. 

The left side (BC side) is more "full" looking but not swollen.  I do have some swelling in my armpit and some discomfort along my pec muscle and into my armpit. 

My BS ordered an ultrasound of my axilla which was negative for "cancerous mass or LN" but didn't address LE at all.  BS says I don't have LE because I didn't have a complete ALND, just a SNB + 6 additional nodes taken.  To me, my left arm feels heavy (this could be all in my head! who knows?) but doesn't look swollen. My wedding ring is tight.

My onc said that there were "palpable differences" in my armpits (this was post- normal US) and was worried enough to order a PET.  This was normal too.  TM's are also normal.  He thinks I may be "trying to get" LE but isn't sure.

So my questions are:

1. LE?

2. Cancer recurrence that PET didn't see?? This absolutely terrifies me...

3. If you think #1 is possible, who should I see? My BS is convinced that I am full of crap...

help!

Michele

PS.  I exercise lots and have normal range of motion but the left side *feels* tight.

Comments

  • lago
    lago Member Posts: 17,186
    edited February 2011

    You can get LE even if you just have a breast removed (acording to my BS). No one, even an MD can diagnos you over the internet so I can't really say one way or the other if you have LE but you have good reason to be concerned.

    Have you checked out this site: 
    http://www.stepup-speakout.org/What_%20is%20_Lymphedema.htm

    There is lots of info on that side including how to find an LE PT. Have they given you any information on how to prevent LE? Yes you are at risk as I mentioned with BMX as well as SNB

    1 more thing. Risk reduction: 
    http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited February 2011

    Yes it can be LE, you have had lymph nodes removed.  LE isn't just visable swelling, but swelling of lymph nodes, heaviness, & possibly pain.  The only way to know for sure is to see a LE therapist.  My LE arm is actually smaller than the non LE arm.  I went to an LE therapist and learned how to do the manual lymph drain.  This has helped a lot.  You will need a doctor referal & not all LE therapist are the same.

  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2011

    Michele, symptoms are very important--the heaviness, the ring tightness--those are all signs of LE, and many of us got LE with "just a SNB"--and, Mei Fu PhD considers 7 nodes removed to be equivalent to an ALND. (I work in rad onc and read path reports all day, and I'm amazed at the variability, just yesterday a SNB=10 nodes removed.)

    So, you know your body, and wisely you're concerned. I think what you've discussed--the axillary swelling, arm heaviness, ring tightness all point toward LE, and early evaluation and treatment are the best way to control it and diagnose it.

    So, Lago pointed you toward stepupspeakout--could you call your onc and ask for a referral to a qualified LE therapist? I think it's the best thing to do.

    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    I think a negative PET should really reassure you that this is likely LE, and not a recurrence. Don't worry about the BS blowing you off--many surgeons do, because "None of MY patients get LE" is a common refrain.

    You'll need a referral from a physician, and it sounds like your onc is the best bet.

    I don't know why physicians, especially surgeons need to deny our reality, but often, due to a complex mixture of lack of information (no education provided in med school or residency or afterwards) and a desire to deny complications that they feel responsible for, it happens--all too often.

    Let us know how you're doing.

    Kira

  • lago
    lago Member Posts: 17,186
    edited February 2011
    mrsnjband my LE arm is smaller than my non LE arm too. Granted I'm not totally convinced I don't have the start of LE in my "good" arm where only 4 nodes were taken. I have more cording on that side.
  • MicheleS
    MicheleS Member Posts: 937
    edited February 2011

    Thanks for the help!  I have an appt with BS next week and if he dismisses me again, I'll call my onc.  Does the LE therapist make the diagnosis?  No one seems willing (or able) to say if what I'm experiencing is LE...  Onc says that it "could be" while my BS and PS both say not likely... <sigh>

    I'm just glad that ya'll don't think I have cancer (again).

  • Estel
    Estel Member Posts: 3,353
    edited February 2011

    MicheleS - My BS blew me off when I mentioned swelling in my fingers.  My PS said, "Well, if you have it, it's very minor."  That was incredibly reassuring!  Yell 

    I finally called my GP who ordered an ultrasound of my arm to make sure it wasn't a blood clot.  And then I FINALLY got in to see an LE therapist.  She said what was said above.  That the feeling of heaviness was a sign that I had it.  Over time, she saw the difference in my fingers and she confirmed that I did have it.  It's so incredibly frustrating that doctors don't believe us!  But we know our body best.  You need to see a certified LE therapist.  She can at least show you some exercise that will help, show you to do the manual lymph drainage.  Keep us posted!

  • lago
    lago Member Posts: 17,186
    edited February 2011

    Michele my onc said I had it but only suggested I do exercises and not wear my sleeves I got for prevention. 1 week later when it didn't get better I called my PS and told him I was diagnosed by my onc but it wasn't getting better. He sent me to a LE specialist who sent me to a LE therapist.

    I would keep going down the list of you MD's till someone agrees to send you to an LE therapist. You don't want it to get worse if in fact that's what it is. The diagnosis will come from an MD not a therapist.

    I also found out from my LE therapist that the sleeves they gave me are too short. I have long arms. Typically they only give 1 month guarantee but they are now letting me exchange the sleeves for the proper size next week. I'm going to have my LE therapist measure me since those other folks don't seem to know what they are doing. 

  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2011

    Michele,

    the LE therapist makes the diagnosis--most physicians don't know how to diagnose LE.And since there's no one definition of what constitutes lymphedema--it can get complex, but good LE therapists can feel it.

    Like the women above, my LE arm is now smaller than my good arm--but my swelling is primarily in my hand and forearm. I did have one LE therapist (well trained) say: "You have swelling, but it's NOT LE"--because I didn't have the 2 cm arm difference. My great LE therapist, will work on me and mutter, "Of course you have LE..." 

    Here's a good article for your doctors on subtle changes--written by a great British reseracher, AW Stanton--it's link to the full article: "Diagnosing Lymphedema in the Arm"

    My favorite part of this article, is that it says that you don't have to have measurable swelling, just subtle changes--skin changes, loss of sharpness of tendons/bones.

     http://britishjournaloflymphoedema.com/journal/0101_arm.pdf

    When you do get to a LE therapist, there are position papers from the NLN (National Lymphedema Network) on therapy and proper training of a LE therapist.

    http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm

    Kira

  • MicheleS
    MicheleS Member Posts: 937
    edited February 2011

    ok- just sent a text to my onc. I just don't feel like dealing with BS...

  • lago
    lago Member Posts: 17,186
    edited February 2011
    Both my LE specialist (MD) and LE therapist are listed on (trained) the LANA (lymphology Association of North America): http://www.clt-lana.org/therapists/default.asp
  • MicheleS
    MicheleS Member Posts: 937
    edited February 2011

    lago~ There isn't anyone where I live listed by LANA but there is a group that advertises that they specialize in LE.  That's who my onc sends people to...

  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2011

    Michele, LANA is a test that LE can take--it shows dedication, and education--it is just a written exam.

    There are great therapists who are LANA certified, great ones who are not, and unfortunately LE therapists who aren't as good who passed the exam. It doesn't assess clinical skills, nor does the LANA board supervise the LANA certified therapists. It's a good step in the right direction, but it's not like a board of licensure for professionals.

    When you get a referral, make sure the therapist is well trained, and LANA certification is a very good sign.

    My LE therapist is LANA certified, and I've met a couple who are who aren't up to her standard of care, unfortunately. Good to know the credentials of anyone who treats you, though.

    Kira

  • lago
    lago Member Posts: 17,186
    edited February 2011

    What Kira says is true. My LE MD (who is the president of LANA) recommended 3 LE therapists. Not all of them were on the LANA list.

  • living4today
    living4today Member Posts: 215
    edited February 2011

    Michele, After my hysterectomy in October, I had the exact same symptoms you did...plus back spasms.  I was so frustrated as I couldn't get anyone to listen to me.  I saw a physical therapists trained in lymphedema and she was wonderful!  I now wear a sleeve and a snug cami, do MLD a few times a week and symptoms greatly improved.  She diagnosed mine as truncal lymphedema.  My left breast area still looks more 'full' than the breast, but every thing else has improved.  Good luck and if you have any specific questions, just send me an email. 

  • Connie07
    Connie07 Member Posts: 636
    edited February 2011

    What if there were no nodes removed? Last years mammo showed a cyst which was aspirated then the surrounding area turned very red.They thought it was infected and I did 3 weeks of antibiotics, still red. Punch biopsy returned neg. a year later there is still redness and some swelling. BS said she thought I might have a "little" LE in there, but did nothig about it. Has been sensitive since dx.

    Friday I had another mammo and today (Sat.)  my whole breast is swollen and becoming uncomfortable. Can a mammo trigger LE in a rads boob?

    ~Connie

  • Binney4
    Binney4 Member Posts: 8,609
    edited February 2011

    Connie, it doesn't very often, fortunately. But we have had women here before with this outcome from a mammo.

    There's no such thing as having "a little LE." That's like being "a little pregnant." Early stage LE is LE, and untreated it will progress, not necessarily with more swelling but with changes to the tissues inside. The redness is likely an indication of inflammation in the breast, a result of early stage LE. Getting good help from a well-qualified LE therapist will help reduce both the swelling and the inflammation, but in the meantime be alert to any new redness, pain, itching, or warmth to the touch and get help quickly if those develop. (I sent you a PM.)

    Gentle hugs!
    Binney

  • Connie07
    Connie07 Member Posts: 636
    edited February 2011

    Thanks, that's what I was expecting, and afraid of. This is aggravating after all this time. And from the little bit of research I've done so far, this sounds like an ongoing thing. I mean, is lt like once you develop LE, you have it forever?

  • Binney4
    Binney4 Member Posts: 8,609
    edited February 2011

    Connie, LE is a chronic condition. But the good news is you can control it. It's a lot to get your mind around at first, but it gets better -- honest!Smile

    Be well!
    Binney

  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2011

    Connie, I bumped a recent thread on breast LE for you--it does respond to treatment, and if you had rads, you're at risk of developing it.

    I work in rad onc and saw a woman recently who went to LE therapy for her breast LE, and now, a year later, it looks and acts so much better.

    It stinks, but it can be managed.

    Kira

  • Connie07
    Connie07 Member Posts: 636
    edited February 2011

    Hi ladies,

    I saw my GYN on tuesday, he said that he did not think it's LE. unfortunately, after reading a lot, I disagree. Will go see the BS on Monday. I had a Lumbar epidural injection sched for tomorrow. BUT the GYN said that I have a vaginal infection (yet ANOTHER infection) and put me on 4 Flagyl all one dose and an AntiB cream. So, now I can't get the epidural cause they won't do it if you are on antiBiotics!!!!!!!!!!!   CURSES!  I've been trying to get a shot in my lumbar for TWO years. To relieve lower back pain and now it's taking over my upper legs. DRAT. it's like the universe doesn't want me to have an epidural because everytime I get close to actually doing it something like this infection happens or my insurance changed and the co-pay was $1,000.00. FOR ONE SHOT! Now, I can do it but now I can't cause of infection.

    Does anyone else have multiple infections?  That's what scares me about the swollen boob. If it is, and we all suspect that it is LE, it puts me AT RISK for infection?!?!   Holy crapola! Like I need another risk that I have no control over.

    Have to see BS. at least this time. Maybe I can get a new one this year. It's not that big a town but there are two different hospitals and 2 CA clinics. I know they all know each other and current BS is top of her group. But we graduated high school together and I wasn't fond of her then. HA But she's the only other one I can get in to see soon, so be it.

    I'm still scared to hear her say it's LE.

    Connie

  • Binney4
    Binney4 Member Posts: 8,609
    edited February 2011

    Connie, what a run-around!Frown Really hoping you can get some pain relief soon.

    Keep us posted on the BS appointment!

    Hugs,
    Binney

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