• What is it like to have lymphadema???

    Asked by jtsmom91500 on Wednesday, December 18, 2013

    What is it like to have lymphadema???

    Hello all of my fellow warriors and caregivers. On October 28 I had a modified radical mastectomy. The path report shows that there were 33 nodes taken. I am terrified off coming down with lymphadema. What is it like living with it? Is it really as terrible as I think it is??? If you have it, what is the one thing you wish you would have done differently in order to had prevented it? And do you ever go in a hot tub?
    Thank you in advance for your answers. Merry Christmas!

    17 Answers from the Community

    17 answers
    • cris' Avatar
      cris

      I had 24 nodes taken out & ended up with lymphedema. My arm feels very heavy at times, I did go to a physical therapist that specialisted in lymphedema, she did show me how to massage my arm & do exercises, it does help I also purchased a sleeve & gauntlet to wear when it flares up which helps. Some insurances will cover the cost of it but mine did not. I have never gone in a hot tub, but it sounds wonderful... I guess living with it I will get use to it, but if I do to much with that arm if does flare up, I just try & do alot with my left arm. It can get painful when it swells to much. Best of luck to you & Merry Christmas!!!

      over 6 years ago
    • JennyMiller's Avatar
      JennyMiller

      I had 11 nodes taken and got Lymphedema within a couple of months. I have gone to a Physical Therapist twice (once at the beginning and then again just recently). Both times, I went through weeks of wearing a compression bandage to get it down -- then I was fitted for a sleeve and gauntlet which I am supposed to wear daily (not at night). However, my hand seems to get puffier when I wear the sleeve -- it is like a no win situation. I do not have pain. The arm just seems a little heavier and bulky. It is a permanent condition so you have to learn to live with it. I will use a skin brush to massage it gently -- and I will elevate it when I can -- and I still try to wear the sleeve. There are exercises that you can do that may prevent an onset -- your Oncologist should be able to provide you with a booklet on it. I wish you the best.

      over 6 years ago
    • sewfun928's Avatar
      sewfun928

      I also developed lymphedema, if I can tell you anything I would say keep on top of it. I went to PT and for the first two weeks my arm was wrapped from my fingers to my arm pit. Was it fun NO, was it easy to learn to wrap No, am I glad I did it ye. I do not wrap a much now but I do wear my sleeve. It is a pain, but we are lucky to be alive! Good luck and Merry Christmas.

      over 6 years ago
    • raven's Avatar
      raven

      I keep my lymphedema in very good control by using Frequency Specific Microcurrent Therapy. It is not easy to find a therapist trained in this, but it is worth the effort. I bought a machine myself because it works so well for me and it allows me to travel and live in remote areas. If you google it you will find a site that gives lists of therapists by state.

      over 6 years ago
    • jtsmom91500's Avatar
      jtsmom91500

      Thank you, ladies, for responding. :-)

      over 6 years ago
    • Lindy's Avatar
      Lindy

      Whoa, too many alarm bells going off. I have lymphedema from a similar situation, my dearest friend has even more of a problem than I and we both are doing well. Make sure your care team is on board to monitor you, know that care can differ, know it is manageable, check with your insurance on garment coverage. Take a breath, you do not catch it, it is a result of damage to the lymph system. I have the good fortune of access to Core Rehab in Keller TX, they are magicians with extra training, do kinesio taping. My favorite lymphedema web site: http://www.stepup-speakout.org/. Learn so you can be your own advocate.

      over 6 years ago
    • TiffanyJ's Avatar
      TiffanyJ

      One thing I'll add, and hopefully your healthcare providers have talked to you about it, is to avoid trauma to the arm. No blood draws, blood pressure taken, avoid cuts, scratches, etc. It seems like excessive heat, like a hot tub, was to be avoided, but I don't remember specifically. Flying on an airplane would require me to wear a sleeve and gauntlet. I hope there is a specialist in your area to meet with to teach you some preventive care. I had 11 nodes removed in August and met with a therapist about four times. Wishing you all the best!

      over 6 years ago
    • CyndiLou's Avatar
      CyndiLou

      I had a bilateral mastectomy with 15 lymph nodes removed and was very worried about lymphodema as well. I did ask my BC surgeon to order physical therapy. I did about 6 weeks of that and felt great. I've got exercises to do and do them 2 times a day just to avoid lymphodema! I want to avoid it vs. finding out what to do once I get it. Plus, I did get the compression sleeve but haven't used it at all. Put bug spray on during the summer to avoid bug bites, wear heavy gloves if garden, take care of that side forever not just recovery time. I never carry my pocketbook on that side or carry heavy groceries on that side. I really pay attention to that. Also no blood pressure checks or needle sticks in that side. Good luck to you and start doing some exercise

      over 6 years ago
    • Maur's Avatar
      Maur

      I had a double radical mastectomy in 2009, I also received chemo: Adriomycin, Cytoxin and taxol and 35 days of radiation, I developed Lymphodemia after my second chemo infusion. I wasn't even aware I had it until I showed up for my appointment and they did the preliminary tests before receiving my daily infusion. My temp was 103* and I was immediately admitted and given I've antibiotics! I remember the fever getting so high I actually became delirious! after about 10 days in the hospital I was released, I was told later, when I was more coherent, that I had developed Lymphodemia. It was scary, I didn't understand what was going on and knock on wood I have never had a recurrence of the Lymphodemia. I was told again that because I had so many lymph nodes removed from my left side (33 as well) that I can never have blood pressures, pulse, blood work, etc on my left arm. My right side only had 10 removed. I know this probably was no help, but I remember well the first year of my ordeal, I wish you luck my friend, keep strong

      over 6 years ago
    • mcowett's Avatar
      mcowett

      It's not terrible, it's just one more thing you have to manage. I don't know what I would have done differently but what I am glad I did was 1)jump on it at the first sign of swelling. act quickly. Get the glove, sleeve and a REED Sleeve. It won't seem like much to worry about but a little swelling becomes normal VERY FAST. It seems like once the skin has stretched out to accommodate the new lymph fluid, it sort of stays that way. 2) treat that arm gingerly, the slightest cut or scrap can become infected so easily. I have had cellulitis 3xs already - it is no fun!!! 3)Really LEARN, I mean REALLY LEARN how to give yourself a good lymphatic drainage massage. Not just going through the motions but give yourself time to go back and work with the PT several times so that you really get it. (I am a massage therapist and I admit that it looks like nothing, but it is something, and you have to "get IT")
      I think the no hot tub rule is 3 fold 1- because of the bacteria exposure 2- how the skin breaks down and soften in a hot tub & 3- excessive heat - if your skin is in good shape and you don't let yourself turn into a raisin I would think the hot tub is ok. the jets can actually be beneficial to moving lymph fluid around in your body. Just don't crank up the heat to high.
      That's my 2 cents worth. Merry Christmas!!!!

      over 6 years ago
    • jtsmom91500's Avatar
      jtsmom91500

      Thank you so much everyone for answering. I have learned a lot because of all of you caring ladies. I am starting radiation on Monday, and have a "mapping" appointment on Friday for that. I will call tomorrow and try to get an appointment with their Lympho specialist to have measurements taken.

      Thank you all again, and blessings to all. :-)

      Kathy

      over 6 years ago
    • MLT's Avatar
      MLT

      My upper arm was slightly swollen after my lymph nodes were removed. Action should have been taken then, but my surgeon told me to watch for any increase. The increase was very sudden and involved my whole arm. At its biggest, I was carrying 10 extra pounds in my arm. Lymphatic massages didn't help much, so then the therapist taught me how to wrap my arm. Had to do that for 2 months along with massages. My arm was better, but then flared up again with radiation and return to work. Back to wrapping. Once it was under control I wore the sleeve all day every day. I went to the closest cancer center. Had massages, got a compression pump and a night time sleeve (Tribute). Insurance paid! They really help when my arm flares up. I do all my normal activity, don't baby my arm, but am more vigilant at any sign of swelling. It is controllable if you keep an eye on it. You do need to be aware that you can get lymphedema anytime in the future, years later. just happened to a friend,13 years after BC. Be proactive, insist on therapy until it's under control and you learn how best to treat it. Don't be fearful, be aware of changes. Learn how to redirect the lymph fluid through massage and some simple exercises. Wishing you the best.

      over 6 years ago
    • smishik's Avatar
      smishik

      I only had two lymph nodes taken out and I developed Lymphedema. My onc. told me that only about 20% of people develop it from breast cancer. I noticed my arm swelling like a bank right around the top of my arm. I called my surgeon and she made an appt. for a therapist. I went for 10 sessions and then insurance wouldn't pay for any more. I use the compression sleeve and gauntlet continuously I will not let my arm get big and they have some cute sleeves from Lymphedivas.com. I also have a night sleeve that looks like an over sized oven mitt. I do my exercised my therapist showed me and the massages every morning and every night. There are a few times i missed and nothing happened but I try to do them religiously. This is for life so I will make sure not to let anything happen to my arm. Just be careful. Nothing is to get to your arm. Nothing to hurt it and even chemicals I was told to stay away from like when your cleaning don't let harsh chemicals touch your skin. Always wear gloves. Best of luck and my God bless you.

      over 6 years ago
    • whirl's Avatar
      whirl

      I guess I am different. I had 26 lymph nodes removed and had lymphedema in the beginning after my double mastectomy. I did buy a sleeve and gaulet out of pocket. I used them only briefly. I had about 6 weeks of PT. Maybe because I am active with both arms I don't seem to have it. Maybe it was the good surgeon. I work out at the gym and do not baby it in any way doing machines, push ups, yoga, and pilates etc. I did have a " funny feeling" with the arm from time to time but even that has been gone for months.

      over 6 years ago
    • tam4givin's Avatar
      tam4givin

      TRUNCAL LYMPHEDEMA is causing me much more problems than in the arm. I kept telling the surgeon's nurses and PAs I was swollen on side and back. They kept insisting I needed to get use to "my new normal" for me body. The oncologists said O NO, and got me a appointment with a physical therapist who right away said she could see it before I even took my shirt off. You need to make sure the therapist does full body Lymphatic drainage massage. Has you do deep breathing, then massages your lymph drainage paths in hip/groin area and all upper body lymph areas. And wear compression wraps or bra to. I have read many places no hot tubs, no hot showers, no extreme temperature changes.

      over 6 years ago
    • smishik's Avatar
      smishik

      lymphedema is a chronic disease meaning it is forever. There is nothing that can be done about it but it is up to you to make sure you take care of yourself as to keep it at a minimum. My oncologist told me that some people won't wear the sleeves and they end up with cellulitis. That is a dangerous condition. Just do some research online. I learned a lot by going on youtube and watching the videos of how to do the massages and the stretches. When you do exercises or even just walking your lymph fluids move around in your body. The circulate through out the body. When it gets to the arm it has no place to go so it just sets there and swells your arm up. It also hurts. When my arm gets cold it hurts too. I wear a thermal sleeve over my compression sleeve. According to my therapist every insurance has to cover two sleeves every six months. You should not have to pay out of pocket for it. The only thing they don't cover is the night sleeve and that is very expensive. There are organizations out there to help. I went to Linked By Pink and they gave me a grant for the first night sleeve. You need to ask your insurance agent about what they cover and ask your surgeon about what they want you to do. you need to ask questions. It is your life.

      over 6 years ago
    • jtsmom91500's Avatar
      jtsmom91500

      Thank you everyone! So much good info!!!
      The hospital where I will be starting radiation on Monday has lymphadema specialists. I emailed my patient navigator, (I am getting radiation closer to home- my chemo and surgery were at a breast center 2 hours from me so my regular oncologist isn't there), and she contacted the Dr. and voiced my concerns. He is going to look at me on Monday. I'll just keep moving and exercising till then. Fingers crossed. :-)
      Thank you all again!!!

      over 6 years ago

    Help the community by answering this question:

    Create an account to post your answer Already have an account? Sign in!

    By using WhatNext, you agree to our User Agreement, and Privacy Policy


    Read and answer more inflammatory breast cancer questions.  Also, don't forget to check out our Inflammatory Breast Cancer page.