De-ported/swelling

midnight10
midnight10 Member Posts: 74
in Breast Cancer #1
I get de-ported tomorrow! One year, four months and 18 days after it was put in. What better Christmas/New Years gift could I ask for?
But I am having some (1-1 1/2) inch swelling in my upper arm on the side lymph nodes were removed a little over a year ago. The physical therapist I am seeing to try to get the nerves/muscles in that shoulder and arm freed up says not to worry about it unless my hand swells--Is that right?
Anyone else told that?
Happy New year to all!
Thanks,
Cindy

Comments

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #2
    Cindy: Happy it's out sorry
    Cindy: Happy it's out sorry some issues...

    Denise
  • Rague
    Rague Member Posts: 3,653 Member
    #3
    See a Certified Lymphademologist ASAP
    Any swelling when nodes have been involved needs to assessed quickly. As it could be the start of LE . The sooner PROPER TX for you is started the easier it is to control. Lymphadema can raise it's ugly in any part of hand, arm, chest and in any combination of areas. For me my fingers are the only part that is not effected.

    Ask your DR for a referral to a CERTIFIED Lymphedemologist. They are trained in identifing and dealing with it. PT's are not, though some like to pretend they are. Cerainly there are some PT's who are also Certified LE's but the vast majority are not. (My LE guy also has his Master's in Occupational Therapy). There are several things that can be done and work to different degrees with different people. Manual drainage massage, day compression garments, night compression garments and MLD machines.

    There is no 'just buy a sleeve and glove off the shelf - they're all the same'. I've been dealing with quite a bit of it for almost 2 years now and we still don't have my custom gloves just right yet (I have weird hands - fingers are fairly short and are partly webbed) so the gloves cut into the skin between fingers. My sleeves are also custom as arms don't fit perfectly into off the shelf sizes either. My night sleeve turned out perfect with the first one. There are also different levels of compression and using the wrong one for you can do more harm than good. My first gloove was high compression and it just made it much worse for me light comprfession works best though I deal with a fair bit of it. I also have a MLD machine that I use for an hour every morning.

    Please see someone who is Certified in treating LE as sson as possible - it doesn't get better on it' own but does get worse.

    Thoughts and prayers.

    Susan
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #4
    Rague said:

    See a Certified Lymphademologist ASAP
    Any swelling when nodes have been involved needs to assessed quickly. As it could be the start of LE . The sooner PROPER TX for you is started the easier it is to control. Lymphadema can raise it's ugly in any part of hand, arm, chest and in any combination of areas. For me my fingers are the only part that is not effected.

    Ask your DR for a referral to a CERTIFIED Lymphedemologist. They are trained in identifing and dealing with it. PT's are not, though some like to pretend they are. Cerainly there are some PT's who are also Certified LE's but the vast majority are not. (My LE guy also has his Master's in Occupational Therapy). There are several things that can be done and work to different degrees with different people. Manual drainage massage, day compression garments, night compression garments and MLD machines.

    There is no 'just buy a sleeve and glove off the shelf - they're all the same'. I've been dealing with quite a bit of it for almost 2 years now and we still don't have my custom gloves just right yet (I have weird hands - fingers are fairly short and are partly webbed) so the gloves cut into the skin between fingers. My sleeves are also custom as arms don't fit perfectly into off the shelf sizes either. My night sleeve turned out perfect with the first one. There are also different levels of compression and using the wrong one for you can do more harm than good. My first gloove was high compression and it just made it much worse for me light comprfession works best though I deal with a fair bit of it. I also have a MLD machine that I use for an hour every morning.

    Please see someone who is Certified in treating LE as sson as possible - it doesn't get better on it' own but does get worse.

    Thoughts and prayers.

    Susan

    Excellent .. Excellent advise,
    and information - Susan. Thank you!


    Vicki Sam
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #5
    VickiSam said:

    Excellent .. Excellent advise,
    and information - Susan. Thank you!


    Vicki Sam

    Cindy .. How are you feeling
    Please let us know .. We are thinking about you .


    Strength, Courage and Hope.

    Vicki Sam
  • jnl
    jnl Member Posts: 3,869 Member
    #6
    VickiSam said:

    Excellent .. Excellent advise,
    and information - Susan. Thank you!


    Vicki Sam

    Yes, how are you doing now
    Yes, how are you doing now Cindy?
  • midnight10
    midnight10 Member Posts: 74
    #7
    jnl said:

    Yes, how are you doing now
    Yes, how are you doing now Cindy?

    Ok
    Getting de-ported was more uncomfortable than I anticipated and I still have a big--maybe 5 inches long bruise and some swelling. The surgeon said not to worry about swelling--again as long as my hand doesn't swell, especially since I'm a year out from masectomy/lymph node removal.
    I haven't been on the site since I saw Susan's response because I had my granddaughter from Thursday until Sunday. We had a great time, but I was exhausted!
    I looked at being deported as hopefully the final stage of the TNBC journey--attitude plays a big part, right? Of course I still have quarterly follow ups with onc. The rad doc says wants to see me once a year for at least two more years, why? And also follow ups with plastic surgeon and general surgeon....that will keep me on my toes and hopefully there will be no reoccurances!
    Susan, I live in the other end of the same state
    Thanks to all.
    Cindy
  • jnl
    jnl Member Posts: 3,869 Member
    #8
    midnight10 said:

    Ok
    Getting de-ported was more uncomfortable than I anticipated and I still have a big--maybe 5 inches long bruise and some swelling. The surgeon said not to worry about swelling--again as long as my hand doesn't swell, especially since I'm a year out from masectomy/lymph node removal.
    I haven't been on the site since I saw Susan's response because I had my granddaughter from Thursday until Sunday. We had a great time, but I was exhausted!
    I looked at being deported as hopefully the final stage of the TNBC journey--attitude plays a big part, right? Of course I still have quarterly follow ups with onc. The rad doc says wants to see me once a year for at least two more years, why? And also follow ups with plastic surgeon and general surgeon....that will keep me on my toes and hopefully there will be no reoccurances!
    Susan, I live in the other end of the same state
    Thanks to all.
    Cindy

    I've always felt that if my
    I've always felt that if my doctors want to see me, even if it is every 3 months, I am glad as I know they are keeping a close eye on me. I do see my rads oncologist every 3 months now.

    I am sorry that the deporting was so uncomfortable for you. I hope the swelling goes down for you soon.

    Good luck Cindy,

    Leeza

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