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Constant fear of lymphedema--VENT

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  • gb2115
    gb2115 Member Posts: 553
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    I got a medical bracelet too, just in case. I figured that's one thing I can control...at least if something happens to me, maybe EMS will see it and not put a BP cuff on my at-risk arm. I got a boring Medic Alert one, but that's because it was inexpensive. :-) They were nice though...it arrived with a clasp I had trouble opening, so I sent it back in and they put a different type of clasp on, no problem!

  • natsera
    natsera Member Posts: 39
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    Hugz (for YOU!), I've never tried to do BG readings in the upper arm. I'm not sure I could even get blood! Tell me a little more about it, please.

    Sandy, I was also advised to get a sleeve for flying, so I did. And then it didn't fit and I only realized it after wearing it for a flight, so I had to get another one. I think I should wear it for physical activity and repetitive motion. Like you I'd much rather avoid problems than have to deal with them.

    It's kind of sinking in that the story was NOT over after the surgery -- stuff can still go wrong. But I just figure I'll do my best and not let it slow me down.

    New question: the LE therapist who evaluated me said I have some cording. But I'm not feeling it. And it's not causing any problems. Is it likely to get worse, and start causing problems, or stay stable or even go away? Does it put me at more risk of LE?

    Also, I do get regular edema for other reasons, and it goes into my arms when I lie horizontally, such as when I sleep. Does that cause any additional risk for LE? I know it's NOT LE because both arms feel the same -- puffy and somewhat taut, and it goes away when I get vertical, but I just wonder if it adds to risk.

  • ruthbru
    ruthbru Member Posts: 47,056
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    There are beautiful medical ID bracelets at http://www.creativemedicalid.com/ (I frequently get compliments on mine as a piece of jewelry!)

    They give you information on how to measure & inscription suggestions for various conditions, mine says: "No IV, BP, needles in left arm"

  • minustwo
    minustwo Member Posts: 13,129
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    Thanks for the link Ruth. That's something I've been meaning to do.

  • pupmom
    pupmom Member Posts: 1,032
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    I had 21 lymph nodes removed 5 1/2 years ago. I then participated in a study to monitor lymphedema, and was deemed lymphedema free 12/16. You only had 3 nodes removed, so why all the worry? Fear never helps one to cope. It may have no basis in reality, and destroys your quality of life, in the present moment. Try to let go of unnecessary anxiety. Best wishes.

  • minustwo
    minustwo Member Posts: 13,129
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    PupMom - so glad that you didn't have LE last December & haven't had to deal with LE. I don't worry, but I DO take prudent precautions. LE is a reality and can hit at anytime, even 20 years down the road. I don't let it rule my life and I don't live in fear, but I don't put my head in the sand either. I'd venture to guess that most of the sisters on these threads know a whole lot more about LE than any 25 docs put together. Maybe any 100 docs - and I'm a big supporter of doctors.

  • glennie19
    glennie19 Member Posts: 4,831
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    I really think some of us are more prone to getting LE than others. Why else would someone with only 1-2 nodes removed get it, and someone with 15+ nodes not get it? I was told that I had no chance of getting it having only 6 nodes removed and being "slim". Wrong. I wear truncal compression daily, sleeve with any heavy work, like gardening, precautions when flying. I don't let it run my life, but I certainly don't want it getting worse, so I'll do what I can to keep that from happening.

  • Jiffrig
    Jiffrig Member Posts: 158
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    LE is a funny thing. I was, and am, so fearful of it that it overshadowed my fear of cancer. I was thinking of not getting rads because it makes it worse. And I had one lymph node involved so of course I did rads. But...even before my DMX I had the bioimpedence reading done and wore a sleeve and gauntlet for one month with bi weekly massage as a precaution. Just finished rads and bio indicated no LE and I had 22 lumpy nodes removed! It's a crap shoot, I think as to how your body's lymph system works. But definitely get good therapy to help things along. I asked My BS, after removing 21 healthy nodes, why she took so many and she said some women just have. Abundant amounts and she wanted to get first 2 levels. I still have DIEP construction in July,hope that dosent screw things up!

  • hugz4u
    hugz4u Member Posts: 1,818
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    natsera. Regarding BG taken from arm. You have to get a testing meter that does alternate sites. I have to rub arm like crazy to get blood and use deepest needle setting My brand is Abbott and it hardly needs blood at all. Still I need to rub. I take it on inner bicep. Not sure if I spelled it right. It's a bit of a bother if your wearing long sleeves. Great if your in a tee shirt. I hear the readings are not as accurate as finger but it's pretty close. It might test a bit lower in my opinion.

    You should private message our expert Binney as I can't answer your question on swelling normally when you lay down and if it will promote le. Excellent question. Haven't heard that one yet. Other question on cording I don't know as I never had cording. Under search type in cording there is a thread no doubt.

    Take care


  • hugz4u
    hugz4u Member Posts: 1,818
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    pupmom. ,Curious here. When you entered the study did you have le or we're they just watching out to see if you would get it and then declared you LE free once the study was done?

    My understanding (unless they have new research out there )is that once a person gets LE unless it's very early stage it is not reversible once it progresses beyond early stage.

    Do watch out in the future for LE monster because it can jump out even when you turn 95! Just be on the lookout to be safe.

    Anyway I'm so happy your le free. Woohoo! Happy dance and hugz to!

  • chisandy
    chisandy Member Posts: 11,332
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    I put my bracelet together starting with an imitation-Pandora-style snake chain bracelet with a lobster-claw clasp on each end and a stepped terminal bead on one end that unscrews for stringing Pandora-style beads. Similar ones are on Amazon:

    https://www.amazon.com/s/?ie=UTF8&keywords=snake+c…

    I don’t see any with dual clasps, but it’s pretty easy to just get an extra clasp from a jewelry-findings vendor or craft store. Unfortunately, there aren’t any medical ID plates to fit barrel-clasp genuine Pandora silver bracelets (nor are there conspicuous medical-alert Pandora-style charm beads), but Pandora does make some lobster-claw clasp silver bracelets. Another option is to get a heart-shaped charm from Lauren's Hope, Eve's Addiction or another medical-alert-jewelry site, have the back engraved, and slip it on to a sterling snake cable bracelet with barrel clasp (bearing in mind that if you put anything non-Pandora on a genuine Pandora bracelet within a year after purchase, you void the one-year warranty).

    Then I got my medical ID plate from Lauren’s Hope.

    https://www.laurenshope.com/stainless-pink-oval-me…

    I used to have one with a red emblem, but switched to the pink one when my LE specialist told me that if EMTs and some hospital personnel don’t see pink, they won’t think “lymphedema” and might start an IV and/or take BP before turning over the tag to read the engraving. I chose the “add rings to tag” option so it would fit the lobster claw clasps.


  • glennie19
    glennie19 Member Posts: 4,831
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    Sandy, thanks for the link to Lauren's Hope. Wow,, there are some bling-y medical alert bracelets available! Will be hard to decide which one to get.

  • minustwo
    minustwo Member Posts: 13,129
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    Natsera posted:

    Also, I do get regular edema for other reasons, and it goes into my arms when I lie horizontally, such as when I sleep. Does that cause any additional risk for LE? I know it's NOT LE because both arms feel the same -- puffy and somewhat taut, and it goes away when I get vertical, but I just wonder if it adds to risk.

    And Hugz recommended she PM Binney. I'd really like to hear the answer for this one. I know I get non-LE swelling when I eat lots of Chinese food with MSG. Also if I work my hands & fingers too much. Sometimes my feet & ankles swell too. Great question - does it adds to the risk.

    Natsera - did you PM to Binney? Would you mind if we re-post this question on the Grrrr site?

  • chisandy
    chisandy Member Posts: 11,332
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    I got bilateral garden-variety foot edema at the end of my trip home from Italy, after I wore constricting sandals and spent a lot of time on my feet, and then took a long flight with very salty food and not walking around the cabin enough. Two (prescribed) doses of Lasix took care of it completely. I don’t get upper-body edema. On my trip to London and flight home a couple of weeks ago, I watched the salt, wore comfortable shoes, and got up and walked around the cabin every hour. Got a little ankle swelling that went away on its own the next day.

    Acc. to my LE doc & therapists, the lower-body edema had nothing to do with arm/hand LE—they are in different quadrants with different drainage patterns. And the lower-body edema was retained interstitial tissue fluid, not lymph.

  • natsera
    natsera Member Posts: 39
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    I would like to PM Binney but I don't know how! Help, someone?

  • minustwo
    minustwo Member Posts: 13,129
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    I sent her a PM and asked her to check into this thread when she gets a minute since we'd all like to hear the answer.

    In the meantime, you can go to the member list and look up Binney4. You'll see a selection to 'send a private message'.

  • binney4
    binney4 Member Posts: 1,466
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    Hello, Natsera,

    Brava for you for being alert to all these things! BC leaves us all with plenty to think about, that's for sure. And knowledge is power--it's what lets us make up our own minds how we want to respond to the risk-reduction information we have, and then put aside our fears as we take action to get on with our lives.

    Since cording is generally quite painful and limiting, I've never heard of anyone not knowing they had it, but stranger things have happened! Here's more information about it (it's actually called Axillary Web Syndrome, or AWS):

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

    There is some evidence that the presence of cording can increase the likelihood of developing lymphedema, but I'm not sure whether that is because of the cords themselves or the pain (which can cause lymph fluid to increase in the area) and restricted movement (which limits the pumping action of the lymph system and makes it harder to get excess fluid out).

    There's also some evidence that some of us have lymph systems that are more limited than others, and one of the indicators of that is that, even before cancer treatment, our hands might swell when we walk and dangle them, or our legs might swell when we sit for a long time. If our lymph system's capacity is already sluggish in these ways, it may indicate we're more prone to lymphedema when our lymph system has suffered trauma from surgery or radiation.

    None of which is a guarantee that we'll ever develop lymphedema, because there are many more factors involved as well, and as yet we have no way of predicting them (or even of identifying them all.)

    As to what to do about diabetes blood testing, the issue is not necessarily the "trauma" of the lancet prick, but the possibility that creates for infection to enter. And if someone has lymphedema, or is predisposed to lymphedema, then the infection risk from any skin break is higher than normal. And infection also ups your risk of developing lymphedema, or creating a flare if you already have it. An added problem here is that lymphedema can be present before any swelling can be detected, so your infection risk may be heightened in your affected-side hand without your even knowing it.

    SO! I hear you on being used to using that hand for finger pricks, plus the added issue of playing an instrument for which you want your other hand to remain sensitive to the strings. If, then, you decide to continue testing on your at-risk hand, here are a few suggestions to increase your safety:

    1. Take the time to wash your hands well before every test (standard practice, I know, but sometimes we're just in a hurry, right?) Carry some of those individually-wrapped wet wipes with you for away-from-home convenience.

    2. Use a new lancet absolutely every time you test (again, standard practice, but...well!)

    3. Clean the site afterward, and be alert for any signs of infection. Here's information on what to watch for:

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

    We all have to decide what compromises we'll make to the reality of lymphedema risk, and not wanting to have regrets is an important part of making those decisions. This is all your call, and I'm sure hoping whatever you decide to do, you'll never have to join our "swell" sisterhood!

    Gentle hugs,
    Binney

  • natsera
    natsera Member Posts: 39
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    Binney, I'm SO glad that Minus Two notified you about my post, because although others suggested talking to you, I couldn't find you (I didn't know about the 4!).

    Anyway, I thank you for your good information. It does appear that I am at some risk because yes, my hands swell up when dangled and also are swollen when I wake up in the morning after having had swollen legs the previous day. However, at this time, the swelling is equal, so I don't think it's LE right now. The trick will bee to stay alert for it while not letting the fear overtake my life!

    The cording is in my armpit and I can feel that it's different from the other armpit, but it is small and really not giving me any problems.!It's a little bit sore but certainly not acutely painful. I wonder if it will stay stable!

    About BG testing, the precautions you mention are well-advised. I HAVE had a few infections in my fingers, although never testing related. I like the idea of having wipes available.

    I guess I'll take your kind advice and see what happens!

  • ksusan
    ksusan Member Posts: 461
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    I've had both cording I'm aware of and cording I'm not aware of, the latter being minor but discernible by my LE therapist.

  • minustwo
    minustwo Member Posts: 13,129
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    natsera - my cording was "broken up" by specific massage from my LE/PT. Nice to have it gone. Something to check on. It would be good to be sure your therapist is actually LE certified.

  • SJI
    SJI Member Posts: 32
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    This article just came across my desk. It describes who is at a higher risk for having lymphedema.

    Surgery Not Only Culprit in Breast Cancer Lymphedema

    RT, chemo add to total burden

    http://www.medpagetoday.com/meetingcoverage/additionalmeetings/64916

  • Bravenurse13
    Bravenurse13 Member Posts: 21
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    I am getting radiation at this time.  My  oncology radiologist will not radiate my underarm where all my nodes were taken  ( cancer free per pathology report), is a protocol for IBC. radiology feels that radiation under the arm after mastectomy may increase risk to develop LE.  Anyhow, my lymphedema specialist wants me to purchase a compression devise for bedtime to prevent LE.  She stated that radiation may cause some swelling so no need to spend 800.00 then my swelling goes down and I cannot fit properly into the brace.  I was told as soon as my arm feels heavy or I have a change in range of motion to see her to get fit for a sleeve immediately.  She warned me that I should not measure and order one on my own, because if it is ill fitting it may make the condition worse.

    Today I was working outside, and doing heavy work, but trying to use the left much more than the right.  I am also lifting back to as much as I did before my BMX, and am back to work full time.  It is now 8 weeks post-op so things are doing very well.

    I try not to limit myself too much, just be aware of what I do.  If I get bug bites, I don't scratch.  If I get a small scratch I put antiseptic on it and keep monitoring.  One must live their life to the fullest, with careful monitoring and common sense by not overuse of LE arm.

    Lymphedema can be reversed  at stage 1; once it progresses to stage 2 then it is managed.

    LIVE   LAUGH  and  LOVE

  • minustwo
    minustwo Member Posts: 13,129
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    BraveNurse - I'm sorry but I have always been told exactly the opposite. I have breast & truncal LE. Three docs and my LE/PT have made it quite clear that if it progresses to my arm (s), it is NOT reversible. You can hopefully keep LE from progressing to other areas if you take all the correct steps to "promote & protect", (see the link below) and you can try to avoid a flare up, but if LE does progress, you will always have it at that new level.

    And unfortunately LE can rear it's ugly head anytime once your lymph system is compromised - even after 30 years. "If you've been treated for breast cancer, you are at risk for lymphedema of the hand, arm, back, and chest or breast on the affected side. If your surgery was bilateral, then both sides are at risk. The risk remains for the rest of your life. The good news is that you can reduce that risk by understanding a few important principles and the safe practices that follow from them."

    I do work outside & I do heavy work, but I built up to it slowly & I wear sleeves. And sturdy garden gloves. I do travel & fly all over, but again - I wear sleeves. Yes, I live, laugh & love - but try to take every reasonable precaution to keep the LE from progressing into my arm (s).

    If anyone has missed Step Up Speak Out, this risk reduction section is very thorough & detailed.

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


  • minustwo
    minustwo Member Posts: 13,129
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    SJI - thanks for the great article. My RO was the first to admit that RADs after my ALND was what triggered my LE. But of course I had both AC and Taxotere. Good to read this update.

  • Bravenurse13
    Bravenurse13 Member Posts: 21
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    MinusTwo,

    Sorry about my post (which I edited after I read over again)!

    Yes lymphedema is not reversible  only in stage 1, and it is never cured. Once it progresses to stage 2 then can only be managed.    The other day I noticed slight swelling in my right hand (cancerous side); after aggressive elevation the swelling did go down, but now I have a call out to my LE specialist, to see what my next step is. My left breast was a simple mastectomy (non cancerous side), my choice to remove so kept lymph nodes in, so far no problems in my left breast so far.

      Thanks so much for the informative article, which will be helpful for now and the future.

  • iz1999
    iz1999 Member Posts: 21
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    hello all, I have a question, I finished my radiation treatment on Dec. 22, 2016, I was told to baby my arm, not to lift anything heavy, no repetitive movements, etc. I followed my dr.s orders and did my arm exercises, but my shoulder started hurting before I finished radiation, so I was sent to see a physical therapist and have been in physical therapy since, now the therapist is telling me to use my arm normally and not to "baby" it, so confused and scared of getting lymphedema, any advice?

    17 nodes, 1 sentinel removed

  • stephilosphy00
    stephilosphy00 Member Posts: 161
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    Hi all, I will have unilateral mastectomy and SNB tomorrow. I know I still have one or maybe more nodes positive after chemo but I decline ALND as I am just scared about LE, I want radiation instead. The surgeon agrees with my decision so tomorrow she will just remove sentinel nodes, but honestly I am not confident if it is a right decision. Any replies are appreciated. ☺

  • minustwo
    minustwo Member Posts: 13,129
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    STeph - in the end, it a decision you have to make. I see you are not HER2+. Did you get an oncotype test? You can get LE from surgery with NO nodes taken, and the surgeon really needs to do SNB (sentinal node biopsy). If your surgeon has agreed, I'd go forward with your plan. You an always go back for an ALND based on what the SNB shows. You can't keep second guessing what tomorrow might bring or your quality of life will be lousy. You make the best decision you can and quit second guessing.

    That said. in your position with positive nodes AFTER chemo (if I understand correctly), I would have them take more nodes. But how to you know if they are still positive w/o a biopsy? That's the only sure way to diagnose. .ALND doesn't necessarily mean all or 10 or 30. I had an ALND after my recurrence. There was only 1 node positive on the right and she only took 7 total. (that's in addition to 3 clear SNB when I had my original BMX)

    Good luck with the surgery. Please do check in and give us an update.

  • chisandy
    chisandy Member Posts: 11,332
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    iz1999, is that physical therapist a certified lymphedema therapist? If she was assigned to you just because of your shoulder issues, she may know diddly about LE. Keep babying that arm—and read her the riot act about LE if she insists on driving you too hard. Remember, she works for you, not the other way around. I have a personal trainer at my gym to deal with strength and flexibility issues—but he knows about my LE and is careful not to have me lift too much for too long, nor to have me do anything like pushups, pullups, or bearing any of my body weight with that arm. I wear not just my sleeve & gauntlet but also my Medic-Alert bracelet during workouts.

  • B123
    B123 Member Posts: 239
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    Hello ladies, I posted on another topic sight but a bit anxious. I am 10 years post B mastectomy reconstruction and rads. I have a lot of pain and numbness under my arms pits mainly the effected R side. My shoulders are sore and my chest has pain around the breasts . I feel like my muscles are tightening. I realized I tried alto exercise and weight bearing through my arms 5 days ago. Could this be the reason? I’m such a mess right now in worry. Thank you!