Lympedema Developed

stillgood
stillgood Member Posts: 46
edited March 2014 in Breast Cancer #1
Hey Ladies, I haven't posted in a while. Things have been quite calm for me. I had a bilateral mastectomy (13 & 8 lymph nodes removed - all negative for cancer), with immediate reconstruction (implants) in July 2002. Everything seemed to be fine. Recently, I had the nipples reconstructed on my new breasts. Soon after I developed lymphedema in my left arm. I'm devastated. This has been my worst fear following my mastectomy. I just didn't want to live my life with huge swollen arms.

I'm currently in the care of a doctor that specializes in lymphedema. Physical therapy in the form of massage and wrapping the arm is the treatment. I will eventually have to wear a compression sleeve. There is no reversing this, only can manage the swelling.

I'm trying not to blame myself for this. Maybe if I hadn't had this last surgery, maybe if I had just been more care.

Anyway, have any of you had any experiences with lympedema developing after your mastectomy. Can you share how things are going with you. I'm trying so hard to be positive. I know that others are fighting for their lives following breast cancer diagnosis and have much bigger issues than swollen arms. But this is big for me.

Thanks for your help.

Linda

Comments

  • krisrey
    krisrey Member Posts: 194
    #2
    Hi Stillgood,
    I am so very sorry you have developed lympedema, it has also been a big fear for me. I worry about it constantly because I am a personal trainer and I lift also. I am always wondering if I am lifting to much and do to much in general with my arm. I am considering going to a lympedima specialist to work with me to be sure that my activities arn't too much for my arm, sort of like a preventive thing, have you ever heard of this. My doctor (surgeon) will not refer to unless I develope the systems so I will most likely pay out of pocket. I cannot understand why there is not more education about preventive therapy of some type BEFORE you need it. Has anyone gone for preventive work for this type of thing?
    Kris
  • tlmac
    tlmac Member Posts: 272 Member
    #3
    krisrey said:

    Hi Stillgood,
    I am so very sorry you have developed lympedema, it has also been a big fear for me. I worry about it constantly because I am a personal trainer and I lift also. I am always wondering if I am lifting to much and do to much in general with my arm. I am considering going to a lympedima specialist to work with me to be sure that my activities arn't too much for my arm, sort of like a preventive thing, have you ever heard of this. My doctor (surgeon) will not refer to unless I develope the systems so I will most likely pay out of pocket. I cannot understand why there is not more education about preventive therapy of some type BEFORE you need it. Has anyone gone for preventive work for this type of thing?
    Kris

    A friend of mine from my Reach to Recovery group has extremely dry skin and developed a condition like excema. At work one day, without thinking, she began to scratch. Before she even realized it, her arm was beginning to swell. She's now in physical therapy. I was warned by my oncologist that even a mosquito bite could set it off as well as a shoulder bag, repetative movement or lifting something too heavy. I also thought if it was going to happen, it would be soon after my surgery but read that it can happen at any time, even 10 years down the road. No blood pressure cuffs or needle stick and a conscious effort to protect the arm was what I was told. I even moved my wrist watch to the other arm because it grips pretty tight.
  • DeeNY711
    DeeNY711 Member Posts: 476 Member
    #4
    krisrey said:

    Hi Stillgood,
    I am so very sorry you have developed lympedema, it has also been a big fear for me. I worry about it constantly because I am a personal trainer and I lift also. I am always wondering if I am lifting to much and do to much in general with my arm. I am considering going to a lympedima specialist to work with me to be sure that my activities arn't too much for my arm, sort of like a preventive thing, have you ever heard of this. My doctor (surgeon) will not refer to unless I develope the systems so I will most likely pay out of pocket. I cannot understand why there is not more education about preventive therapy of some type BEFORE you need it. Has anyone gone for preventive work for this type of thing?
    Kris

    Kris, ask your oncologist for a referral.
  • tulip66
    tulip66 Member Posts: 32
    #5
    Linda,

    I am so sorry to hear about the Lymphedema. I had an concern with it last fall. I had injured my arm and my thumb and forearm started to swell. I immediately went to a specialist and got fitted for a sleeve. It turned out that the swelling was due to the injury and not lymphedema but it was an eye opener for me. I wear my sleeve sometimes as a preventative measure - especially if I am doing lifting, traveling or sitting at the computer for a long time. The specialist told me that they have great success with massage therapy and wearing the sleeve. Your swelling may go down significantly enough that others won't even notice. The importance is to wear the sleeve and do your exercises that they recommend. Swimming apparently is a great one. My therapist also stressed not gaining weight and being extremely careful with scratches, cuts and burns. The more that you can use your muscles in the arm the better the fluid can escape. It is wonderful that you have a Dr. that specializes in this - there are very few of them.

    I hope that you keep your head up. Keep us informed about it. It is a big issue and you shouldn't feel like you have to apologize for worrying about it. I bet all the women on this site who had a lymph node dissection are concerned about this. I know that I am.

    Your in my thoughts. Ruth
  • judiek
    judiek Member Posts: 71
    #6
    Hi Linda,

    I am so sorry to hear about you lymphedema. I bought a book "lymphedema" A breast caner patient's guide to prevention and healing, By Jeannie Burt and Gwen White. It teaches you how to do manual lymp drainange on your own. Since you are already being treated I'm sure your specialist has taught you this. For those of you who whis to try and prevent it, I recommend this book. It's pretty simple to understand. Hope this helps.


    Judie
  • PMclaughlin
    PMclaughlin Member Posts: 1
    #7
    Hi, I'm new to this so bare with me. I've experienced Lympedema off and on for the past 7 1/2 years. I had a bilaterial mastectomy in 96 and was in remission until 3 years ago. Metastatic to the lung, but am doing fine. As far as the lympedema goes its my right arm. The side they took most of the nodes from. I can only offer what worked for me. My dema was pretty much under control until the B/C came back. So I have to start over again. I found that by doing light weight lifting, exercising regularly and really watching not to drink alot of alcohol, that will cause it to flame up. Also your diet is very important. I think the free weights I used really helped keep it under control. Probably doesn't make sense, but worked for me. As soon as my doc gives me the go ahead I'll be back at it with the weights.
  • epgnyc
    epgnyc Member Posts: 137
    #8
    I'm a breast cancer survivor but have been lucky so far in not having lymphedema. However, one of my closest friends had a bad case. When I met her six years ago (she'd already had it for five years at that point in time) her arm was very large and she had to wear the elastic sleeve constantly. But in the last couple of years she has seen an enormous improvement in the arm. It's about 75% less swollen and the majority of the time she doesn't even need her sleeve. She swears the huge improvement is the result of her having started doing yoga a couple of years ago, but of course that's hard to prove. But it may be that light exercise can actually help. But my point here is that while there's no getting rid of it entirely, you can have it improve dramatically. So hang in there! Good luck.
  • ksfc
    ksfc Member Posts: 251
    #9
    Hi Linda, I had my surgery in Feb of 2002 and developed lymphadema shortly afterwards due to a staph infection. I was sent to physical therapy and did what you described, massage, exercises and wrapping. That stabilized things. After chemo and radiation and making sure that things remained stable, I was fitted with a compression sleeve. I wore it daily at first and now just wear it when I'm doing something that could cause my arm to swell or when it starts to swell. I'm very careful with my arm and it really seems to help. Don't worry - you're not resigned to a life with a huge arm. Just be very diligent about the treatment and the precautions. Diane
  • stillgood
    stillgood Member Posts: 46
    #10
    Ladies, You all never fail me when I have concerns. Thanks for the positive look at this lympedema stuff. Through you I see life with a compression sleeve ain't so bad. It's life with an adjustment. By the way, my therapist says that my arm is responding well to the manual lymph massage therapy and the bandaging. In fact, after just 2 weeks of massaging and bandaging, my left hand and forearm (affected side) measure the same as my right hand and forearm. Still working on getting the upper arm measurements down, but it looks good.

    Again, continued good health to you all and thanks so much for sharing your life experiences. It helps to know that I'm not alone in this.

    Linda
  • billandpatty
    billandpatty Member Posts: 86
    #11
    I'm sorry about your lymphedema. I haven't had it but like all breast cancer survivors, other than cancer returning it's the next worst nightmare for all of us. I have attended a workshop for lymphedema and have been treated by a physical therapist to help prevent the onset of it after I had melanoma surgery last year on the same side/arm that I had breast cancer surgery. Even tho' I haven't had lymphedema, my arm "acts up" every once in awhile -- I believe it's a warning to me that I better pay attention to it. I had to pay for lymphedema treatment after my last surgery myself, but thought it was very worthwhile. I think you have to search for what works for you. As for myself, I exercise daily and I try to keep my weight down and my arm feels better. When it starts to feel tight I massage it and do the manual drainage. I believe it helps. Also, after the surgeries, I kept my arm elevated on a pillow at night and I kept icing my arm and under my arm. Don't feel the need to apologize about being concerned about your swollen arm(s) -- it's not a fun thing to have and you deserve to have it taken care of.
  • swillingham
    swillingham Member Posts: 1
    #12
    billandpatty said:

    I'm sorry about your lymphedema. I haven't had it but like all breast cancer survivors, other than cancer returning it's the next worst nightmare for all of us. I have attended a workshop for lymphedema and have been treated by a physical therapist to help prevent the onset of it after I had melanoma surgery last year on the same side/arm that I had breast cancer surgery. Even tho' I haven't had lymphedema, my arm "acts up" every once in awhile -- I believe it's a warning to me that I better pay attention to it. I had to pay for lymphedema treatment after my last surgery myself, but thought it was very worthwhile. I think you have to search for what works for you. As for myself, I exercise daily and I try to keep my weight down and my arm feels better. When it starts to feel tight I massage it and do the manual drainage. I believe it helps. Also, after the surgeries, I kept my arm elevated on a pillow at night and I kept icing my arm and under my arm. Don't feel the need to apologize about being concerned about your swollen arm(s) -- it's not a fun thing to have and you deserve to have it taken care of.

    Even after 10 years I am having trouble with swelling in my arm. It has just recently developed. Right now it is very painful in the elbow area. I thought after 10 years that all the danger would be past but I let a nurse take my BP in my arm while I was getting a Remicade injection in my other arm. I had been told that after 5 years there wasn't much danger. This coming from a doctor no less. Well little did he know. I have had a cat-scan this past week and there was nothing else wrong so I am hopeful that this will not be any thing that I can't handle even though it has put a crimp in many of the things that I love to do. My dad had a great saying "this is no hill for a climber" and that is what I strive to live by. Compared to what others are going through I'm sure that this is only a "little hill". Good luck to all of you and keep a stiff upper lip.

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