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StephanieJM
StephanieJM Member Posts: 78
edited June 2014 in Lymphedema

Hello, I had breast cancer last year, surgery, chemo and radiation.  Lumpectomy and ALND.  Gosh, I've been just sailing along trying to get my life back in order and bam..... now lymphedema!!

I have a few questions....  I live at sea level, I mean a mile from the beach; we went camping at an altitude of about 4500 ft. then I noticed my arm feeling tight... could that have caused it?  I haven't flown in a plane since surgery so now am worried about that.  We also have a sauna and I recall being warned about extreme heat and cold, I have used it very little but just did a couple of weeks ago.  Maybe the combination within a couple of weeks? 

I was at my oncologists for my first year check up on Tuesday and she thought my arm was a little larger and had me get a sleeve.  The lady in the cancer center fit it on me, it was ready made nothing custom, if there is such a thing.  I've been wearing it during the day, doing some arm massage.  She said once this starts it doesn't go away..... reading some of the posts here it sounds like your arm can swell, go down and then have another flare up later.   Honestly, there is so much to read about lymphedema on BC.ORG.  I was trying to put cancer out of my mind and get on with my life, I got so tired of reading about chemo, radiation, etc. etc.  I want to do all I can to control this.  Thanks for any advise!

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited October 2013

    Welcome to the gang, we indeed are swell people. That being the case it is best to stick with us. I live on the coast at sea level pretty much. You are describing exactly what I feel like at 4000 ft. Tight and achy ifI am in a car on a long trip. Get out of the car and fist pump with arm straight up into the air, belly breath and try resting the arm on a pillow to raise it higher. Walk for ten minutes. Drink tons of water.

    It is wise to wear a glove or gauntlet but your medical staff may not know this, otherwise the fluid gets pushed to your hand. Go to stepup-speakout.org where our smart talented LE girls have made a web site to cover most of your questions. Oh and fire away questions. No question is a dumb question when It
    comes to LE.

    If you catch this early enough you may not have a huge problem so jump on the learning bandwagon while the going is good. It is a steep learning curve and we can help you.



    Yah cancer sucks but LE sucks even more IMO. Still keep your head up and surge forward.....March!

    Our frequent flyers will soon come on to advise you on flights.



    Sorry,No sauna or hot tub or hot bath, yikes.....I have a infrared sauna and haven't stepped in yet. I do dip in and out of the hot tub but only a few seconds at a time. Don't want to raise the body temp too much as it will draw lymph fluid to the area making for more swell. I don't stay in, just warm up from the cold pool to take chill off. You will have to see what you can get away with.

    No heavy lifting for now or you could set it off worse.

    No heavy massage, you will need to learn a MLD massage which is about a heavy as petting a cat.





    It is best if you get custom LE gear made up for you but off the shelf is helpful too.

    The web site I gave you talks about how to find a qualified manual lymph drainage therapist who can measure your arm, educate you and keep a eye on your arm so it doesn't get worse. Ah hon,.....you probably need a big hug and lots of binneys famous chocolate virtual brownies. Sending them your way. :)

    Hard to say what set it off.





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  • hugz4u
    hugz4u Member Posts: 2,781
    edited October 2013


    just checking up on you Stephanie, you ok?

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  • Tishfin
    Tishfin Member Posts: 22
    edited October 2013


    I am new here too...but, this seems like a very supportive and welcoming group of survivors :)

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  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited October 2013


    New here too. Through information on BCO, I suspected I had truncal LE, even though RO said no. I have been seeing an awesome LE therapist for a week ( 3 times) and will see her for 3 more weeks. She fitted me for a compression # 2 sleeve and gauntlet and has me wearing compression garments. I have a VERY physical job so, want to make sure i do everything right so as not to screw up how a make a living!


    Thanks for any information!

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  • RMlulu
    RMlulu Member Posts: 1,989
    edited October 2013


    Hi y'all


    LE ugh! During rads I asked RO about my 3rd girl...trunk swelling. Assured me nothing to be concerned with it would go away after rads. Well I'm 5 months out and it swells shrinks but never says goodbye.


    Started PT and accupanture ..,self massage...helping or at least the heaviness is better. I was fitted for a compression sleeve but now need to return for a corset. I fly (4X) 5 hours max...hydrate, wear sleeve, keep arm elevated, wiggle in seat, and get up and move every hour. Hubby wants to try a mountain trip but have avoided go above 6000 ft.


    We're moving soon so a bit concern...I do all the packing...not sure how this is going to go down. So the fitting for a corset is imperative.


    Self care is :))) so stay ahead do self massage and know your body...and seek help!


    My BC center offers great services so check out yours and do the show and ask until you are satisfied.


    LE is not to be ignored.


    (((Hugs)))


    Cindy

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  • StephanieJM
    StephanieJM Member Posts: 78
    edited October 2013


    Thank you for asking. Yes, I am doing better. I was just so overwhelmed with something more to learn about. All of the answers I have read are so hopeful. I did go to the LE therapist that I saw once after surgery. She had done some bench mark measurements incase there were some future concerns. Actually, my measurements were the same. I feel the things I had read on here that I had started doing were helpful. I had never heard of the hand pumping while raising the arm. Deep breathing.


    We also just lost our poor old dog after many happy years. The last two weeks have been so stressful, I felt she had to take that last trip to the vet but my husband just wasn't ready (he's a real sweetie) ..... so we had a lot of stress and tears. I am sure that added to my concern about LE.


    I also want to mention a natural healing site Earthclinic.com that I have gone to for many years they have quite a section on LE


    http://www.earthclinic.com/CURES/lymphedema.html I did drink the green tea daily, lots of water and wrapping with cabbage leaves was to be next on my list! :) But I had to really think about that one but it sounds like it can be helpful.


    Bless you all!

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  • kira66715
    kira66715 Member Posts: 4,681
    edited October 2013


    Stephanie, here is another resource, a web site created by women who "met" on this board


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


    We insisted that all our advice be "evidence based" and we got HON certification for the site (health on the net--very rigorous)


    I think you'll find it a good and responsible resource.


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