Join our Webinar: REAL Talk: Healthy Body and Mind After Breast Cancer Treatment - Jan 23, 2025 at 4pm ET Register here.
Take our poll: Has your faith, spiritual, or religious beliefs changed since cancer?
Share with us: What are your "mantras" to get you through a test, treatment, a bad day?

GRRRRRRRRR I HATE LE..........

1…169170172174175…332

Comments

  • Hchurch902
    Hchurch902 Member Posts: 5
    edited November 2012

    You shouldnt wear if you have numbness!! go get it refitted!!

  • momto7
    momto7 Member Posts: 114
    edited November 2012

    I am going for surgery on the 8th and had lymph nodes removed from the right side no my dr wants to remove them from the left because on the MRI  something suspious  showed up .  i had one or 2 removed before in 2008 on the left I have never had any problems  crosses fingers I am wondering tho if this time since they are doing a complete mastectomy if  I will have any problems  what causes lymphedema  have not found much info on this  or i am not looking in the right place thanks  for reading this !

  • purple32
    purple32 Member Posts: 1,767
    edited November 2012

    Hi momto7

    Fingers crossed here for you.  Hopefully, you will be just fine.

    There is not as much info on LE 'out there' as should be .

    You've come to the right place. There are so wonderful and very well-informed ladies right here in this forum that are extremely helpful.

    You can also check out :
    http://www.stepup-speakout.org/

    If I were in your spot, I would contact my DR. (after learning the risks etc / check website URL) and specifically ask for prevention tips AND an Rx for a LE therapist to see post surgery so that you can be evaluated and further educated  to know what to look for .

    You are very wise to get the jump on this.

    Bets Wishes to you!

  • gmafoley
    gmafoley Member Posts: 5,978
    edited November 2012

    To add to what purple told you: you want your arms, wrist and hands to be measured prior to surgery. You came to the right place for info. You will get through this and just because they take nodes out, doesn't mean you will get it, but you will be at risk. Step up also has a page of precautions thing as you need to know. Ask as many questions as you like, we are here for you.

  • binney4
    binney4 Member Posts: 1,466
    edited November 2012

    Nibbana, yes, seams can cause real grief. So can a garment that's just too tight in one dimention. I agree with Imprezeagirl--don't wear it until you get this straightened out. In the meantime, stick with wrapping, if you know how. Or an Isotoner therapeutic glove might be gentler and not cause a problem. Keep us posted!
    Hugs,
    Binney

  • nibbana
    nibbana Member Posts: 349
    edited November 2012

    Binney, 

    Don't wear it??? Oh no, what do I do now? Can't see my LET for a thumb, can't wear the gauntlet. I can try ordering another gaunlet and hope the fingers are a little longer. 

    Damn, this sucks. I meant grrrrrrrrrrr, this sucks.

  • LindaKR
    LindaKR Member Posts: 1,304
    edited November 2012

    Nibbana - I have custom one piece sleeve w/gauntlet and in the beginning it hurt my thumb a lot, seemed to put pressure on something that caused me numbness and pain, so I was always stretching on it and very annoyed.  The fitter told me that sometimes women do complain about that and she recommends letting it dry with a lipstick tube or something slightly bigger than your thumb in the thumb of the gauntlet.  It really worked.  Give it a try and let me know what you think.

    Do any of you wear one piece with a glove?  I need to get one of those next, I had to have a punch biopsy checking for skin mets, just radiation recall dermatitis, but the punches aren't healing and the biopsy immediately triggerd my LE, causing more swelling than ever before.  What do you think of the one piece with glove

    .....and, I think damn was the right word, I HATE LE!

  • momto7
    momto7 Member Posts: 114
    edited November 2012

    Thanks Purple and GMA i have been reading the web site it is really good i will defiantly ask the Dr for a referral  i know our paper ran a article on lymphedema last week i am going to call that theraphist too and talk to her I am praying everything goes ok i about cringed when they said do not life anything heavy after they took the nodes on my left side in 2008 no one told me about that and i went back to work after a few days i better stay on my diet too yikes i have gained 7 lbs in a few months  just trying to take it easy

  • purple32
    purple32 Member Posts: 1,767
    edited November 2012

    linda

    I just ordered a sleeve with a glove...waiting for it to come in.

  • purple32
    purple32 Member Posts: 1,767
    edited November 2012

    momto7

     I am praying everything goes ok..

    So too are we!
    You know more now, just be careful and be safe !

  • gmafoley
    gmafoley Member Posts: 5,978
    edited November 2012

    Momto7 - you will be fine and I'm praying the surgeons hands go smoothly and all will be well..

    Hard to say this after giving a pep talk, but today I just can't wear my sleeves... this open wound is leaking yellow goo again but my breast isn't pink/red..it looks ok... On the other hand, my whole body aches and sleeves just seem to make it worse... I guess I take a break and not wear the sleeves???? That is a question btw.. I want this to end!!!! Rats....I know.. Look at my own signature - I think I will imagine that...

  • gmafoley
    gmafoley Member Posts: 5,978
    edited November 2012

    Well, just looked at the weather - we are going from hot to dry - to freezing and snow by wednesday... Barameter doing a number on me??? Do I need the sleeves more than ever now?????

  • Tina337
    Tina337 Member Posts: 516
    edited November 2012

    Gma, that stinks. At least you checked with Bob and know you have done all you could. Because of barometric pressure change, and especially since you are going without sleeves, I will repeat the standards since I forget them and have notes around the house. Do deep breathing exercises several times during day, drink lots of water, watch the sodium in your diet, limit caffeine, and get proper sleep.

  • LindaKR
    LindaKR Member Posts: 1,304
    edited November 2012

    Gma - I read somewhere that if you do have an infection, and it sounds like you might with your symptoms, that you aren't supposed to do massage or wear a sleeve until the infection is resolved.  I'll see if I can find that.  Do you have an appt with your doc?  Can you put a call in to your LE therapist?  Praying for you.

    On another tack - I was reading on another topic about a woman that got a tattoo on her BC side, she had surgery, sentinal node biopsy, not sure about radiation, but.... my LE therapist and one that a friend of mine went to absolutely freaked out about tattoos on the quadrant that your BC was on, both on the front, back or side.  So just a reminder - if you want to get a tattoo run it past your LE therapist first so that they can let you know where it would be safe (are tattoos safe?) to have one before getting one. 

    Linda

  • binney4
    binney4 Member Posts: 1,466
    edited November 2012

    Gma, skip the sleeve for a while and ELEVATE (with support). Check in with your doctor on the drainage, yes? And keep us posted.

    Momto7, prayers for smooth sailing! Please let us know how it goes. Thinking of you on the 8th.
    Hugs,
    Binney

  • gmafoley
    gmafoley Member Posts: 5,978
    edited November 2012

    I called and am waiting for a call back - surgeon is doing a surgery... what a novel idea... LOL Been through this so many times I just shake my head...

  • hugz4u
    hugz4u Member Posts: 1,818
    edited November 2012

    To all my sweety's having troubles, Dear girls, Just hang in there, I'm thinking of you, I know i'ts rough right now for you but I am sure your stupid LE or surgery complications will get better with time and then you will look back and say "thank goodness I endured." You can do it girls! You got us here for "hands on" support, and especially emotional support (we seem to be the only ones that "really get it!") Kiss A big sloppy kiss for all you having LE related issues and a big sloppy kiss for all the girls supporting them!

  • gmafoley
    gmafoley Member Posts: 5,978
    edited November 2012

    Depression has set in.... this leak has the best of me - it is looking like it is getting infected... surgeon says he wants to see me, not to take any antibiotics... but doesn't call me back to set up an appt. week 7 for the leak issue..In the meantime no sleeves and no MLD....

    Then my med supply place that was supposed to have a possible free apnea machine for me and said that would take up to a week to find out if I qualify - its been 3 weeks.. when I call and ask they say, "We have been looking in to it and will notify you as soon as we hear anything".. In the meantime, I hurt, I fall asleep during work, and I am very cranky..I just need lots of cyber hugs and an encouraging voice... I just don't know what to do anymore....

    edit: Oh did I mention it looks like I might need gloves at $150 a pop... LOL - Chocolate... I know I need to figure out where to get the isotoner gloves... doing that right now..

  • duckyb1
    duckyb1 Member Posts: 9,646
    edited November 2012

    Fed up. Still not wearing the garment, cause it does shit. Even stopped the therapist. Really don'tcare anymore. All the money spent o co-pays and I am no better off a year later. Giving up. Whatever happens, happens.

  • LindaKR
    LindaKR Member Posts: 1,304
    edited November 2012

    Gma - my LE therapist gave me a catalog that has the isotoner gloves in it - the website is www.BeAbleToDo.com and the catalog is called Functional Solutions.  The Isotoners are about $20 and there is another Brand, Norco, and they are only about $10 ea, also Thermoskin for about $30. Just went to their website and was redirected, but they actually have several brands of gloves.  I'm going to need to get a one piece sleeve w/attached glove, luckily my insurance pays 80%.

  • gmafoley
    gmafoley Member Posts: 5,978
    edited November 2012

    Just ordered a pair of isotoners for $18.95 on amazon from beabletodo.com. So one issue down. Now for the apnea & infected leak.

  • Cindyl
    Cindyl Member Posts: 498
    edited November 2012

    For those of you who use the isotoners... how do the sizes run?  I debating between small and medium.

  • gmafoley
    gmafoley Member Posts: 5,978
    edited November 2012

    Ducky, I didn't mean to start a Grrrrrr party, but thanks for joining in. I am so sad you haven't found what works for you :-( It seems like we all have our nemesis. Mine = leaky boob, you = LE. Praying we both conquer our problems.

  • Estel
    Estel Member Posts: 2,780
    edited November 2012

    Re the isotoner gloves...IMO...it's ok to order the size down because they are not tight and they do stretch out quickly.

  • Cindyl
    Cindyl Member Posts: 498
    edited November 2012

    Dawne - good to know.

  • sandcastle
    sandcastle Member Posts: 289
    edited November 2012

    Ducky....I have done very well on my own....it is trial and error....also, there are times I keep away from these boards....because they can beat a dead horse.....the more you dwell the worse it can be for one emotionally.......just live life the best you can.....Liz

  • LindaKR
    LindaKR Member Posts: 1,304
    edited November 2012

    Going to LE therapist today - yipppeee - it always  makes me feel better!

  • gmafoley
    gmafoley Member Posts: 5,978
    edited November 2012

    Still waiting.... I really hate waiting... Undecided

  • purple32
    purple32 Member Posts: 1,767
    edited November 2012

    Cindyl

    True to size if you want any bit of " compression" (term used loosely here)

     I am normally a small and so I ordered a small.  Right thing to do. They do work very nicely  for mild swelling...thanks YET again to Binney for sharing.


    GMA

    I sooooooo wish I could help you . Things did not work out with my ins., co. I am sorry.

    Please try not to let the de[ression get the best of you. I just know there is light at the end of your tunnel!
    (((hugs and Prayers )))

  • gmafoley
    gmafoley Member Posts: 5,978
    edited November 2012

    Having surgery to take out the seroma and any scar tissue Friday...

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.