Radiation and Lymphedema Prevention

Options
Jojobird
Jojobird Member Posts: 203
edited November 2016 in Lymphedema

I start radiation next month. 30 or so treatments (not sure of exact number yet) and am concerned about it triggering lymphedema. I had 21 nodes removed in April during my mastectomy. Has anyone with this many nodes removed not gotten lymphedema from rads? Any tips, other than the standard lists of to do/not to do, to prevent this side effect? I really don't want to get it ( and who does, right?)

Worried.

· Share on FacebookShare on Twitter

Comments

  • Kicks
    Kicks Member Posts: 4,131
    edited October 2016

    There is not a one of us who deal with LE ever 'wanted' it. IF it does happen - DEFINATELY not the end of 'living'. I am every bit as active as I have ever been.

    Get an appt with an LET for evaluation/measurements/ education prior to starting rads. Be sure the person you see is actually an LET - not just some PT or OT who claims to know 'all about LE'.

    My LE started 6 weeks into 12 weekly adjuvant Taxol. In other words , before rads.

    · Share on FacebookShare on Twitter
  • Jojobird
    Jojobird Member Posts: 203
    edited October 2016

    Thank you,Kicks! In no way did I Mean to imply that anyone wants LE and I am sorry if my post came across that way. Thank you for the suggestions you provided... I will ask rad onc for measurements.

    · Share on FacebookShare on Twitter
  • Kicks
    Kicks Member Posts: 4,131
    edited October 2016

    Do not ask a rads Dr for measurements - ask for a referral to an LET for the evaluation, measurements, EDUCATION. Unfortunately, most MDs are woefully ignorant about LE.

    · Share on FacebookShare on Twitter
  • glennie19
    glennie19 Member Posts: 6,398
    edited October 2016

    Agree with Kicks,, get a referral to a certified LE therapist now,, before you start rads,, get baseline measurements, education.

    · Share on FacebookShare on Twitter
  • cp418
    cp418 Member Posts: 7,079
    edited October 2016

    I had 18 nodes removed and had both chest and axillary radiation - 10 years ago. (lumpectomy) Initially I had cording under my arm and I immediately did stretching exercises. However, I must mention that I am a horse owner and my mental sanity was about being in the barn with my horses. This meant a lot of physical activity in terms of brushing my horses when I was unable to ride. This was extensive stretching and moving of my arm on a daily basis. I even cleaned stalls when I recovered surgery - again, very physical movement with arms. Maybe this regular activity has helped me avoid lymphedema so far.....

    · Share on FacebookShare on Twitter
  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited October 2016

    Once you get your referral to an LET, be sure to ask about any stretching (or other) exercises you can do during RT to help keep the tissues from tightening up too much. It may not have any effect on the risk of lymphedema but it will help you recover your normal range of motion after RT. You'd probably be wise to start babying your soon-to-be radiated skin now, too - whatever lotion your BS is ok with around your scar, etc. One of the radiation nurses gave me that bit of advice and I'm glad she did!

    · Share on FacebookShare on Twitter
  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited October 2016

    I am just fine. I do everything that I did prior to active treatment, including lifting and crunches. I added in jogging a few years ago for bone health. I did nine days of cycling of 60 miles or more this past season, and hope for one more to make it an even 10.

    I really believe that exercise is beneficial, although some women do get lymphedema despite exercising. But no, it's not inevitable as I also had 21 nodes removed. Good luck and keep moving! BTW - I never lost my range of motion, but I had a lumpectomy which is entirely different. Make sure you do the exercises. - Claire

    · Share on FacebookShare on Twitter
  • LymphActivist
    LymphActivist Member Posts: 64
    edited October 2016

    Seeing a qualified lymphedema therapist before the radiotherapy is excellent advice. The advice about stretching exercises as early as your doctors allow is also excellent protective activities. Unfortunately, the combination of nodal surgery plus radiation gives you about a 1 in 2 chance of developing upper limb lymphedema. Hope that your genetic makeup is such that your lymphatic system is robust, and that you are one of the 50% that does not get lymphedema. Another thing to be aware of is that breast and nodal surgery and radiotherapy also cause breast, chest, back lymphedema, largely ignored in the literature and by doctors. Your trained lymphedema therapist can discuss this with you. You may wish to read "Breast and truncal Lymphedema--Its Nature and Treatment" on my web site at http://www.lymphactivist.org/breast_lymphedema_for_therapists.pdf

    · Share on FacebookShare on Twitter
  • Jojobird
    Jojobird Member Posts: 203
    edited October 2016

    Thank you ALL for the thoughtful and salient replies. I really appreciate it!

    · Share on FacebookShare on Twitter
  • gardengypsy
    gardengypsy Member Posts: 769
    edited November 2016

    LymphActivist and everyone~

    I am 10 months out of surgery, seven months from chemo, and three months from radiation. Now feeling tightening and aching in arm, shoulder and chest. I was not prepared for this at all. I thought there was no chance of getting LE because it was sentinel mode removal only. Tomorrow I meet with a certified LE PT.

    · Share on FacebookShare on Twitter
  • ksusan
    ksusan Member Posts: 4,505
    edited November 2016

    Radiation increases the risk of LE. Fortunately, there are interventions a PT and knowledgeable massage therapist can do to help with range of motion, adhesions, and lymphatic flow.

    · Share on FacebookShare on Twitter
  • Kicks
    Kicks Member Posts: 4,131
    edited November 2016

    gardengypsy

    LE can 'happen' after ANY surgery or traumatic injury. It is not limited to BC or the number of nodes removed (or not removed). It can also 'decide' to show up at any time - even years after the surgery/injury.

    I have a friend who had minor/non-invasive knee surgery - she deals with a lot of LE from the surgery. 45+ years ago, I had a fairly severe lower leg injury (large skin area and circulation issues) riding injury while working a young horse and was told to expect LE issues to develop - never has.

    It was 9 weeks post UMX that my LE started showing up. (3 weeks post surgery and 6 weeks into adjuvant weekly Taxol). My LE is basically in my elbow area - think that because of a very badly placed IV post C-section back in '78 that caused phlebitis in elbow area that kept me in the hospital several days. Can't ever know for sure.

    It really doesn't matter to me - LE does not limit me at all - Iam a very active outdoor woman and do any and everything I want to do. Yes - I rather not deal with it but does not slow me down/limit what I do.

    My LET guy (fantastic guy) is not a PT but an OT. 'We' did have some issues early on because I'm 'weird' - OTS (Off The Shelf) garments can not be used by me so it takes custom ones.

    · Share on FacebookShare on Twitter
  • gardengypsy
    gardengypsy Member Posts: 769
    edited November 2016

    Kicks and ksusan~ I have begun PT - 1x weekly. Doing some light stretching and swimming. No diagnosis of LE, doing this as a preventative measure.


    · Share on FacebookShare on Twitter

Categories