lymphodemia

spring04
spring04 Member Posts: 2
edited March 2014 in Breast Cancer #1
Hi Group,
I was wondering if anybody here that has had all their lymph nodes removed, if you are worried about lymphodemia occuring? My surgery was in May and I am a wreck about worrying about getting it. I had good recovery and have great range of motion considering I had three surgery's two of which were for lymph nodes. My arm gets tingly and my hand started to get that way recently. I would like to know how others have faired that had all there nodes removed. Thanks!

Comments

  • DeeNY711
    DeeNY711 Member Posts: 476 Member
    Request information about lymphodema from your surgeon, oncologist and gynecologist. Pamphlets are available to help you recognize what you can do to minimize your own risk. Educate yourself. It is quite common to have transitory tingling. There are effective treatments for lymphodema, so if it does develop, you will be seeing a physical therapist. It might be a good idea for you to obtain instruction from a physical therapist now so that you know you are doing all the right things to prevent lymphodema. Just so that you know for the future, if you are driving a long distance or even crocheting for a long period of time, you will notice changes in how your upper arm feels. The pamphlet given to me also mentions that you can be fitted with compression sleeves for air travel to minimize the effect of altered air pressure on you. Hope this helps. Hugs, Denise
  • tessap76
    tessap76 Member Posts: 1
    Hi there. I had my lymph nodes removed in April. I have started to get some swelling and pain in that arm. I have had one week of therapy with someone trained in treating lympedema. It seems to work and the swelling has been going down. I have been measured for a compression sleeve, but have not received it just yet (hopefully first of the week). It has not been too bad so far, but it is still early. You need to ask your doctor if there is someone who specializes in lymphedema therapy in your area. I feel it is working for me. Good luck!
  • Snookums
    Snookums Member Posts: 148
    tessap76 said:

    Hi there. I had my lymph nodes removed in April. I have started to get some swelling and pain in that arm. I have had one week of therapy with someone trained in treating lympedema. It seems to work and the swelling has been going down. I have been measured for a compression sleeve, but have not received it just yet (hopefully first of the week). It has not been too bad so far, but it is still early. You need to ask your doctor if there is someone who specializes in lymphedema therapy in your area. I feel it is working for me. Good luck!

    I think I worried about it so much I brought it on. I know logically, that isn't true but I did worry. Well, my biggest fear came true and to be 100% honest, "it ain't that bad". The key is to see an occupational therapist that does deal with lymphodema, and I agree that your onc. should be your first call. That is how I got refered and insurance covers it as well as the sleeve and glove. I don't mind it, because I don't want uncontrolled swelling. I had a very small amount of swelling in my hand and my nurse and therapist told me that is where it starts. I had massages for a few appointments and then, ugh- wrapping for 2 weeks with 3 ace bandages to bring swelling down. I was so glad to get out of those and into a sleeve I think that is why I do not mind wearing it 24, 7. My OT and I also, worked on stretching and keeping my left (no node side) strong. Only used a 1 lb weight mostly, did stretching and lots of reps. I go at least one night a week without it and anytime I want to "go out" I don't wear it. It is very manageable and not as bad as you fear. Peace of mind is an important part of healing so go have it checked. My prayers are with you- C
  • Kimm
    Kimm Member Posts: 12
    I had all 30 nodes removed 9/11. I will be scheduled for a class soon, but I have worried also, because I have basically resumed all that I used to do. Hard not to. I don't understand the hows and whats. I will let you know when I have had my class!
    Kimm
  • krisrey
    krisrey Member Posts: 194
    Kimm said:

    I had all 30 nodes removed 9/11. I will be scheduled for a class soon, but I have worried also, because I have basically resumed all that I used to do. Hard not to. I don't understand the hows and whats. I will let you know when I have had my class!
    Kimm

    Kimm,
    I had no idea they had a class, I would be very interesting to hear all about it. I have read the phamplets and such, but I did read something about not lifting anythingy heavy..My problem is that I do lift, literally in the gym. I am afraid my workout with weights may be too much. It seems like the answers that I always search for are not available. Just like the tamoxifen. I don't want to gain weight, but understand that is a side effect. The question I want to know is what causes the weight gain, is it water? Is it lack of exercise? Is is controllable? I guess I like to know everything..lol
    Thanks for responding eveybody, I appreciate it!
  • krisrey
    krisrey Member Posts: 194
    krisrey said:

    Kimm,
    I had no idea they had a class, I would be very interesting to hear all about it. I have read the phamplets and such, but I did read something about not lifting anythingy heavy..My problem is that I do lift, literally in the gym. I am afraid my workout with weights may be too much. It seems like the answers that I always search for are not available. Just like the tamoxifen. I don't want to gain weight, but understand that is a side effect. The question I want to know is what causes the weight gain, is it water? Is it lack of exercise? Is is controllable? I guess I like to know everything..lol
    Thanks for responding eveybody, I appreciate it!

    I thought I was responding to the tamoxifen post from a few days ago and got mixed up..but anyway I was also worried about the lymphodia, so that info was great! thanks.
  • lindatn
    lindatn Member Posts: 229
    Since this question on Tamoxifen and wieght gain came up on this thread I will answer here. I have been on Tamoxifen nearly a year and have lost five pounds. At first I gainned and decided no way so I went on a diet plan of no sugar, no white flour and no red meat. Mostly I eat vegetables and fruit, fish and eggs twice a week, also stopped all milk products. Only fat I use is olive oil. I use a herbal formula and have had nearly no problems with my arm dispite 13 lymp nodes removed, two were cancerous. I had a lumpectomy,chemo and radiation. Will it continue to work who knows but for today it is and I'm very thankful. LindaTN