Lymphedema

shout51
shout51 Member Posts: 11
edited March 2014 in Breast Cancer #1
In May,1995 I was diagnosed with breast cancer in my right breast. I had a bilateral mastectomy- just to be safe on the left breast which was riddled with cysts. They removed 20 lymph nodes under my right arm, two were cancerous. I had 6 treatments of chemotherapy and 30 radiation treatments. On one of my check-up visits within the first year, I brought the fact of my right arm being swollen to my surgeon's attention and she sent me to a lymphedema specialist immediately. This was something I knew nothing about and even though I feel I had the best doctors anywhere, they never even mentioned this to me. As I started physical therapy and trying to understand what this was, I found there is not much information out there. What this is: The fluid that normally flows through the lymph nodes in your arm goes down the arm but has no way of coming back out and this causes your arm to swell and keep swelling and so on. I have been taught how to manually massage my arm and it helps. Of course, my husband is the one who does it. I have to wear a compression sleeve all the time except when I am sleeping. The sleeve lasts about 3 to 4 months and it has to be replaced at a cost of almost $400.00. This disease is life-long and can be very depressing. I wanted women like me who were not told about this condition and for future breast cancer patients to recognize what it is. What we lymphedema patients need is more information.

Comments

  • ruthanne
    ruthanne Member Posts: 3
    #2
    You are not alone, there are alot of us out there. lymphedema is litle recoginised and less discussed. I had alumpectomy in May 1999, I also had 14 lymph nodes removed. none were cancerous. Thank you God! I then received four power doses of chemo. they let me rest for one month and followed up with 7 weeks of radiation. I just celebrated my 2 year anniversary of being cancer free. But less then one year after surgery, I made 3 or 4 trips by plane. NOONE told me to wrap with compression bandages during flight. I now have and will have for the rest of my life lymphedema. It is under control, but I must do Massage therapy to myself daily. I must wrap daily. I have differnt sleeves to wear day and nite, ALL are expensive and rarely covered by insurance. PEOPLE need to be MORE onformed od LYMPHEDEMA> What it is, how to avoid it and how to treat. DOCTORS wake up and help out!!!!
  • gogranny
    gogranny Member Posts: 1
    #3
    ruthanne said:

    You are not alone, there are alot of us out there. lymphedema is litle recoginised and less discussed. I had alumpectomy in May 1999, I also had 14 lymph nodes removed. none were cancerous. Thank you God! I then received four power doses of chemo. they let me rest for one month and followed up with 7 weeks of radiation. I just celebrated my 2 year anniversary of being cancer free. But less then one year after surgery, I made 3 or 4 trips by plane. NOONE told me to wrap with compression bandages during flight. I now have and will have for the rest of my life lymphedema. It is under control, but I must do Massage therapy to myself daily. I must wrap daily. I have differnt sleeves to wear day and nite, ALL are expensive and rarely covered by insurance. PEOPLE need to be MORE onformed od LYMPHEDEMA> What it is, how to avoid it and how to treat. DOCTORS wake up and help out!!!!

    Hey ruthanne!
    I too suffer from lymphodema, but in my legs. However, my oncologist wont fess up to the fact that it has been caused by the lymphnodes he removed during my surgery in my legs. The swell up like i was 10 months pregnant, but if i lie down and keep my feet elevated they will go down. My oncologist even sent me to a urologist because he said it was probably kidney failure!!! Can u believe that???? Anyway, i did get my kidneys checked out and they are fine, but my GP doctor said that i needed to have one of those leg pumps to use every night for about 30 minutes on each leg. BUT, once again, a catch....you can only get those if you are an inpatient in the hospital. They will not approve them for "at home" use!! And, to top it all off, if they did, my insurance would not cover it!!! I am very grateful to be alive, but due to the cures of my illness i do have side effects, as all of us do. But i just dont understand why the doctors will not take responsibility for these things that happen afterwards!!
    This website is wonderful for sharing and i will be back in here very soon!!
    Take care of yourself and email me anytime!!
    God Bless Ya, Granny
  • rhea45
    rhea45 Member Posts: 1
    #4
    I am a twice cancer survivor I had a bilateral masectectomy with 19 lymph nodes taken out of the right arm I was not aware of the potential for lymphendema until it became a painful problem, and the fact that there are not many people trained in lymphedema massage or how to allevate the pain and believe me it does get painful, my husband does not understand the extent of the pain so I do try to sleep with my arm elevated more
  • rae_98390
    rae_98390 Member Posts: 28
    #5
    rhea45 said:

    I am a twice cancer survivor I had a bilateral masectectomy with 19 lymph nodes taken out of the right arm I was not aware of the potential for lymphendema until it became a painful problem, and the fact that there are not many people trained in lymphedema massage or how to allevate the pain and believe me it does get painful, my husband does not understand the extent of the pain so I do try to sleep with my arm elevated more

    Hi,

    I have been checking this board for months waiting for any posting. It is nice to have a place to write to with people who understand how we feel.

    I am sorry you have lymphedema. It is painful. If you can find therapy and get massage, wrappings, pressure glove and or sleeve, part or all of the above, it helps the pain. It is not the perfect answer but it works better than elevating your arm. Just did not do the trick for me.

    It took me a few doctors to find one who knew someone who could help. My oncologist did not know. My surgeons nurse had information on where to get help when I went in for my regular check up. It is a bit of a process but it helps.

    Post again and update us on how you are doing or email me at rae_98390 here on the cancer survivor network it would be nice to hear from you.

    Cindy
  • janierejoice
    janierejoice Member Posts: 3
    #6
    I have the same scenario as you did with voluntary bi-lateral mastectomy and two of my twenty nodes were effected. Lymphedema is most distressing and I have had the certified manual massage, sleeve,all day every day, and bandaging at night for many months now and it doesn't seem to get much better. Yes, I agree we need lots more information. My oncologist knew so little that he poo pooed the sleeve and let me fly to germany, nine hours, unprotected. That's when the lymphedema first appeared. I hope you will respond to this as I don't really know how this discussion thing works. I just discovered this site because I started working for the American Cancer Society. If you get this, my E-Mail is jlangfel@cancer.org
  • janierejoice
    janierejoice Member Posts: 3
    #7
    I'm not sure how this works so let me know somehow if you get this. My story is exactly like your in every way. Would love to talk to you. I work for the American Cancer Society and you could E-Mail me here any time. jlangfel@cancer.org
    Hope to hear from you; Janie
  • ccole
    ccole Member Posts: 2
    #8
    I get my sleeve by ordering it by mail from
    Draper's Fitness. I found them on the internet. I had my Measurments and Compression number and it cost me half of what they charged me at the therpy clinic.
  • farside
    farside Member Posts: 1
    #9
    I too had no idea about the complications of lymphedema...and I don't understand why women are not told of this. We definitely need more information about what lymphedema is and how to best manage it...my dr. referred me to a therapist but unfortunately my insurance does not cover such visits...my arm swelling is not too severe but it is a life long disease and will need to be addressed every day... Good luck to you...I'm searching the web for any info I can find on lymphedema.
  • bettylou
    bettylou Member Posts: 4
    #10
    I was diagnosed w/breast cancer in R. breast in '84 & in L. in '99. My R. arm & hand began swelling 4 yrs ago & is 1"+ more than L. I also had swelling under L. armpit from '99 surgery. I began therapy which helped for a while. Last yr. I spent 4 mos. with a therapist specializing in Lymphodema-the light massage, 8 bandages, etc. did not help. A sleeve made esp. for my arm was suggested-none of theirs fit my arm dimensions; however, I didn't have the $200 for the sleeve. Medicare pd over $4M for my treatment, with no results, but wouldn't pay for the special made sleeve which may have helped. My arm swells in hot weather more-I can't wear a prothesis bra due to the swelling under my L. arm & side & I've trouble finding blouses, etc. to fit due to the R. arm being larger. I was NEVER told by my Drs. re this could occur & several women who've had breast cancer I've talked to knew nothing about it neither! I didn't find out for 16 yrs! I feel Drs. should adv. patients about this so they can get treatment b/4 it becomes too late!

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