How long should I worry about developing lymphedema?

Tamlen
Tamlen Member Posts: 343 Member
in Uterine/Endometrial Cancer #1

I'm now 26 months post-surgery and have no lymphedema symptoms. They took all my pelvic nodes, so I've been worried about it. I exercise vigorously every day and am quite active.

I've read that for breast cancer survivors, the risk of developing lymphedema drops off dramatically after 3 years. Does anyone know how long until the risk reduces a lot for we uterine cancer survivors? I know the risk is never gone, just wondering if there's knowledge out there for when our risk goes substantially down.

Thanks!

Comments

  • cmb
    cmb Member Posts: 1,001 Member
    edited April 2020 #2
    Lymphedema

    Most of the studies I read when I developed lymphedema didn't mention a typical time frame range for when this could develop. But I was more interested in learning whether the lymphadenectomy had an increased survival benefit, so I wasn't really looking for that type of time estimate.

    I developed lymphedema in my legs (the left leg being worse than the right) about 2 ½ years after surgery. I also had pelvic radiation, which increases the chance of developing lymphedema.

    I had thought I was "safe" from this side effect since I had gone more than two years without lymphedema. So I was disappointed when it developed, despite the length of time after treatment.

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #3
    Mine, too

    I, too, thought I had missed getting in my legs but 2 years later my left leg became very hard and it needed massage.

    I did PT for 6 weeks, 2/ week and now have a drainage machine I use 2/3 times a week. 

  • Forherself
    Forherself Member Posts: 1,018 Member
    edited April 2020 #4
    General knowledge

    Just what we were taught as nurses.  The way to avoid lymphedema is exercise and movement.  Pooling lymph creates lympedema.  Your muscles are moving the lymph.  If you are being extremely active I would say you are getting the best result.  Also elevating your legs and wearing support hose if you are not doing that already.

     

  • MoeKay
    MoeKay Member Posts: 495 Member
    edited April 2020 #5
    Patient Education Section of UpToDate

    UpToDate has a patient education section on Lymphedema after Cancer Surgery which states, in part, as follows:

    Most patients who develop lymphedema do so within two to three years after their surgery, but it is important to note that the risk remains over a person's lifetime and increases with trauma or injury to a limb. 

    For more information, here is a link to the entire article:  https://www.uptodate.com/contents/lymphedema-after-cancer-surgery-beyond-the-basics.

    So it sounds somewhat similar to the information you found for breast cancer, Tamlen.

    In reviewing the references listed at the bottom of the article, most relate to breast cancer.  However, the article itself is not limited to surgery for breast cancer and the discussion covers cancer surgery in general. 

     

  • Tamlen
    Tamlen Member Posts: 343 Member
    edited April 2020 #6
    Thanks

    Thank you for the help, everyone. No compression or support hose for me (can't stand it, my entire life; haven't put on stockings in 20 years), but I will remain diligently active and keep my fingers crossed. I do elevate my legs when sitting. I appreciate the information you all shared.

  • 8molly09
    8molly09 Member Posts: 2 Member
    #7

    I have Lymphedema in the groin area. I had considered surgery but after doing research I have decided that I don't want to take a chance on removing my lymph nodes. Has anyone had lymph nodes removed in the pelvic area.

  • 8molly09
    8molly09 Member Posts: 2 Member
    #8


  • PrisPeck
    PrisPeck Member Posts: 10 Member
    #9

    Thank you so much

  • woodstock99
    woodstock99 Member Posts: 206 Member
    #10

    I had breast cancer (early stage) 6 years ago but had a double mastectomy and sentinel lymph nodes removed and was afraid of lymphedema developing. I sought out a LANA-certified massage therapist for lymphatic draining massage and to help me with my scar tissue and fascia issues, She was and still is amazing. I saw her often the first year after my surgery and then for tune-ups as needed ever since. I also learned to do some self-massage and also to do dry brushing. I have been seeing her monthly since my hysterectomy last June as a proactive protective measure to work on my pelvic area.

    No one knows what will happen in the future but there is a lot we can do to be proactive.

    Why see a aLana certified specialist: https://www.clt-lana.org/public

    LANA Certified Specialist directory: https://www.clt-lana.org/therapists?radius=25&zip=01826

    oops sorry not sure why this is in bold & larger type but

    There is also a lymphatic specialist who wrote an excellent book, does online classes, has a podcast, is on Instagram, etc. Her name is Lisa Levitt Gainsley, CLT - she is on Instagram as thelymphaticmessage

    ✨Author, THE BOOK OF LYMPH

    ✨Wellness from a lymphatic point of view

    ✨The LYMPHATIC MASTERCLASS online

    ✨Certified Manual Lymph Drainage & Lymphedema

    https://linktr.ee/thelymphaticmessage

    Hope these resources can be of value.

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