lymphedema in left arm

katiepie
katiepie Member Posts: 5
edited June 2014 in Lymphedema

Hi everyone, my mother is a survivor of breast cancer. She had a mastectomy done on her left breast on February 2010. Afterwards, she had chemotheraphy done. In September 2011, she started radiation treatment. Due to the mastectomy operation her left arm is swollen and hurts when she does exercise or anything else related to decreasing the pain and the size. She has a medical sleeve outfitted by the doctor but it does not effect much. Her whole body is swollen but it does not appear like that. She's exercising daily and eating right but her left side (the whole arm) is swollen. The doctor said it is lymphedema. How do other women cope with this and does anyone have the same symptoms or the chronological order in which everything was done? Thank you :)

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2012

    Hello Katie, and welcome to Breastcancer.org.

    Until members post with their own experiences, you can read much more about lymphedema at the main Breastcancer.org site.

    • The Mods

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  • cowpower
    cowpower Member Posts: 293
    edited December 2012

    Hi Katiepie, I also have swelling in my left arm due to mastectomy related lymphedema, or LE. My treatment is just beginning. I can tell you what is working for me. I am seeing a physical therapy groupthat specialises in LE. So far,my arm is wrapped in compression bandages to push the lymph back up my arm- from the hand upward. I also receive massage, or Manual Lymph Drainage, twice weekly. Only when my arm gets to the point where it is no longer getting smaller when it is measured will they fit me with a sleeve. Also, there are very specific LE exercises, not just the regular post mastectomy ones. Hopefully, your mother can ask for a referral to a lymphedema specialist. Good luck to both of you.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited December 2012

    Katie, welcome!

    I'm so sorry for your mom's pain, and having to deal with this for so long without the help to get the swelling down and keep it that way. She needs a referral by any member of her medical team to a well-trained lymphedema therapist. Here's how to find one near her:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    And here's information about how lymphedema is treated:
    http://www.stepup-speakout.org/treatments_for_lymphedema.htm

    Unfortunately it's not uncommon for our doctors to know little about lymphedema.Frown Here's information for doctors, written by a doctor with lymphedema, that your mom might want to copy off and discuss with her healthcare team.
    http://www.stepup-speakout.org/essential informat for healthcare providers.htm

    Thanks for being here for her! Tell her we'll be thinking of her and rooting for a great therapist to give her some relief!

    Be well,
    Binney

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  • carol57
    carol57 Member Posts: 3,567
    edited December 2012

    Katie, In addition to the great advice from cowpower and Binney4, I'd add this:  Encourage your mom to join us here in the bc.org lymphedema forum.  Lymphedema is so very frustrating, and frustration breeds stress. Unfortunately, as Binney pointed out, few doctors know much about lymphedema. It sounds like your mom's doctor at least acknowledges it, but he didn't send her for proper treatment, so here she is, in pain, uncomfortable, and not knowing what to do.  Others here have had similar experiences, so we know that stress and frustration and we're here for each other.  She might feel relieved to 'meet' so many women who know first hand what she's dealing with, and there's a lot of good advice and there are many helpful resources posted in conversations here.

    You are fabulous to take up your mom's cause, so do stay with us--but I hope you'll encourage your mom to join in the conversation!

    Carol

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited December 2012

    Katie, Do you have any updates on your mom? Is she OK? Tell her that there are a bunch of us routing for her and we care.Smile

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  • katiepie
    katiepie Member Posts: 5
    edited July 2013

    Thank you for your reply. That is very inspiring.

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