Now.....lymphodemia

Skybuf
Skybuf Member Posts: 143
edited March 2014 in Breast Cancer #1
Anyone out there got lymphodemia in mastectomy arm? I just developed it......(don't need it either) hard to type and do anything! Hospital told me to just wrap it until I see my Dr. Dr. said don't worry about "it" until we rule out ca reocurrence....so I am wrapping it with tensor and holding it up as much as possible...rubbing it,
Going for a C.T. Scan Thurs to rule out anything ELSE that might be happening!
Your prayers would be appreciated for good results! Seeing Oncologist after test when they get me an appointment.
Thanks all

Comments

  • phoenixrising
    phoenixrising Member Posts: 1,508
    #2
    That really sucks!! So sorry to hear about the lymphedema, hope you find a way to manage.
    Yes, lots of prayers and good vibes going your way and good luck with the CT scan. I'm sure you'll be fine.
    cheers
    jan
  • seof
    seof Member Posts: 819 Member
    #3
    Not yet. I am working on scheduling my mastectomy which will include some (I think 4?) nodes to be removed, so I may yet find myself in your position. I have known a couple of people who had the condition. One had very little trouble, the other had a lot. It seems to vary as much as the rest of cancer and its treatments do. I hope the Drs. can help you find a way to live with it as comfortably as possible.

    Sorry I'm not much help. If you find some good tips, I may be asking you in Jan/Feb.

    All the best to you and yours. seof
  • 3cbrca
    3cbrca Member Posts: 206
    #4
    I have it too - it developed a couple of months after surgery - too much airplane travel. Ask your doctor to send you to a lymphedema clinic so that you can get Physical Therapy. I had 2 months (3 days a week) and it seemed to get it under control. There is so much to know about lymphedema and the oncologists don't know much about it. I have a sleeve, a compression bra and a glove that I have to wear on airplanes or doing excercise. If you have it in your hands you need to wear the glove if you're on the computer for a long time. It is a major league pain in the patutty!! I think it "bums me out" more than cancer.
    Bes tof luck at your appt.
    She
  • cabbott
    cabbott Member Posts: 1,039 Member
    #5
    Of course the doctor doesn't need to worry. It's not his arm!!! There is an excellent book on lymphedema I found in my public library. It mentioned a lot of things that can trigger it: infections, bug bites, overuse, all sorts of stuff that brings the lymph fluid in. Thanks to the damage node dissection does, the lymph fluid doesn't go out and the arm swells. So start by treating your skin like you are the Queen of Sheba. Treat any and all scratches with soap and water followed by an antibiotic ointment. I am allergic to neosporin, so I can't do that one. But I love the prescription Bactroban. If an infection sets in and swelling begins or if you have a severe injury, call the doctor to get on an oral antibiotic. Most breast surgeon teams won't balk at putting you on one right away. Better safe than sorry. If the swelling has already set in, do the tests, but also consider calling a specialist in lymphedema massage. It is more effective than the automatic pumps. A rehab therapist that specializes in this kind of massage should have some kind of certificate to indicate their special training. We are not talking heavy duty massage. You need the kind that starts at the chest area and encourages the lymph fluid to drain toward the heart. Gradually they will work back from the top of your arm and finally down to your fingers. I understand that they use very light motions and that it is very relaxing. Afterward they wrap your arm to maintain the reduced volume. A friend of mine had it done. Her husband went with her so that he could learn how to do it for her. Eventually he was good enough to do the technique for her on a regular basis. I understand that you can also learn how to do it on yourself to some degree. Sooner caught, sooner remedied. Even truculent cases can see improvement from the stuff I've read. I've only had one scare. I had a hangnail I bit off (big mistake) and then I washed dishes without wearing the rubber gloves. I was in a hurry. My hand looked like a three year olds: nice and puffy. Only I was in my mid 40's and thin (usually). The doctors in my town had no idea what to do. I propped it up, tried taking ibruprofen, sweated a lot from worry. Finally I tried dabbing the Bactroban on the red hangnail every 4 hours round the clock and the hand swelling went down overnight. After that I used the rubber gloves like they suggest (at least most of the time). Good luck with yours!
  • jackiemanz
    jackiemanz Member Posts: 85
    #6
    I hate to hear that. I'll keep my fingers crossed for ya.

    Good luck,
    Jackie
  • Skybuf
    Skybuf Member Posts: 143
    #7
    cabbott said:

    Of course the doctor doesn't need to worry. It's not his arm!!! There is an excellent book on lymphedema I found in my public library. It mentioned a lot of things that can trigger it: infections, bug bites, overuse, all sorts of stuff that brings the lymph fluid in. Thanks to the damage node dissection does, the lymph fluid doesn't go out and the arm swells. So start by treating your skin like you are the Queen of Sheba. Treat any and all scratches with soap and water followed by an antibiotic ointment. I am allergic to neosporin, so I can't do that one. But I love the prescription Bactroban. If an infection sets in and swelling begins or if you have a severe injury, call the doctor to get on an oral antibiotic. Most breast surgeon teams won't balk at putting you on one right away. Better safe than sorry. If the swelling has already set in, do the tests, but also consider calling a specialist in lymphedema massage. It is more effective than the automatic pumps. A rehab therapist that specializes in this kind of massage should have some kind of certificate to indicate their special training. We are not talking heavy duty massage. You need the kind that starts at the chest area and encourages the lymph fluid to drain toward the heart. Gradually they will work back from the top of your arm and finally down to your fingers. I understand that they use very light motions and that it is very relaxing. Afterward they wrap your arm to maintain the reduced volume. A friend of mine had it done. Her husband went with her so that he could learn how to do it for her. Eventually he was good enough to do the technique for her on a regular basis. I understand that you can also learn how to do it on yourself to some degree. Sooner caught, sooner remedied. Even truculent cases can see improvement from the stuff I've read. I've only had one scare. I had a hangnail I bit off (big mistake) and then I washed dishes without wearing the rubber gloves. I was in a hurry. My hand looked like a three year olds: nice and puffy. Only I was in my mid 40's and thin (usually). The doctors in my town had no idea what to do. I propped it up, tried taking ibruprofen, sweated a lot from worry. Finally I tried dabbing the Bactroban on the red hangnail every 4 hours round the clock and the hand swelling went down overnight. After that I used the rubber gloves like they suggest (at least most of the time). Good luck with yours!

    THANK you all for your input, much appreciated. I am looking after my own arm now as the Oncologist I seen said......it's probably a reocurrence so we won't bother with the arm right now!!!! duh.....it's a part of ME! I am furious with her, won't see HER again. My own Dr I deal with wan't in that day. I get my CTScan Thurs then results next Monday......thanks for your prayers and hope to be more positive next time!
  • 3cbrca
    3cbrca Member Posts: 206
    #8
    Skybuf said:

    THANK you all for your input, much appreciated. I am looking after my own arm now as the Oncologist I seen said......it's probably a reocurrence so we won't bother with the arm right now!!!! duh.....it's a part of ME! I am furious with her, won't see HER again. My own Dr I deal with wan't in that day. I get my CTScan Thurs then results next Monday......thanks for your prayers and hope to be more positive next time!

    It is hard to be positive when you have doctors making remarks like that. My scan is a week from Tuesday and I'm kind of edgy myself. Best of luck tomorrow from your "Mega Node" friend.
  • billandpatty
    billandpatty Member Posts: 86
    #9
    The best advice I know is: to not wait to get it treated, you'll have a better outcome the sooner you're able to receive treatment. Many doctors don't believe it's much of anything, I found they are the doctors to stay away from, if you can. It's your arm and I'm sure you'd like to use it.

    I've had breast cancer surgeries and melanoma surgery on the same side of my body -- same arm pit for lymph nodes ... the second go-round I went to a physical therapist specializing in lymphedema therapy pre and post surgery and it was wonderful. I was on a plane going to a family wedding 10 days after surgery with no problems. (advice: always wear a compression sleeve when flying).

    Good Luck with everything and I hope you get relief in your arm real soon.

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