Hey breast cancer fighters and survivors! Help me with Lymphodema

CrazyHarry
CrazyHarry Member Posts: 4
edited December 2022 in Breast Cancer
My 33 year old daughter was diagnosed with stage 0 last fall and subsequently had a double mastectomy. She is BRCA positive with a strong family history of breast cancer.

She now suffers from debilitating lymphodema and has actually been hospitalized a number of times due to this.

Anybody out there suffering the same fate have any ideas on how to deal with this better?

Thanks much!

Comments

  • beachbum5817
    beachbum5817 Member Posts: 238
    edited February 2021
    My lymphodema was caught by the person that was doing my physical therapy after my double mastectomy. She was trained on how to handle it. I went for treatment 3 times a week for 3 months. I have never had a problem with it since. I hope your daughter can find relief for it.
  • Bug
    Bug Member Posts: 394
    edited February 2021
    My oncologist referred me to a physical therapist who specializes in lymphedema issues. The PT massaged me and taught me how to do it to myself. Maybe your daughter's onc can refer her to someone who specializes in lymphedema issues or your daughter can find someone on her own. I think it's important to find someone who knows what they're doing.

    Just FYI, I also wear a compression sleeve and gauntlet when I fly. I have blood pressure taken and blood draws and IVs done on the opposite arm from the affected side as well.

    Good luck to your daughter. I hope she finds someone who can help.
  • Dina
    Dina Member Posts: 11
    edited February 2021
    A physical therapist specifically trained to work with lymphedema - that's how I got through it to the point of it being mild but chronic now. I still wear a compression sleeve and gauntlet (glove) when I exercise (which is a LOT), and if I fly, or hike at altitude. Here are some good resources: National Lymphedema Network (https://lymphnet.org/) which provides a resource directory and lots of educational information, Ninjas Fighting Lymphedema Foundation, Lymphoedema Support Network, and many online support groups such as one FB group I am in: Lymphie Strong (Official Lymphie Strong Inspiration Group for Lymphedema: https://www.facebook.com/pg/LymphieStrong/posts/?ref=page_internal. https://www.facebook.com/LymphieStrong/groups/).
  • tlalex
    tlalex Member Posts: 8
    edited February 2021
    It amazes me and is very comforting in how ‘ in tune ‘ we all are in our experiences. I know I get tunnel vision and so wrapped up in myself that I forget my issues aren’t just my issues! After I read
    CrazyHarry’s need and before I looked at the responses given, my first thoughts went back to my positive experiences with my PT. I developed cording in the arm lymph nodes were removed from right away and couldn’t begin radiation until that was dealt with. I am so grateful now because of the wonderful help I got through md Anderson and the young women who was specifically trained to work with breast cancer patients and lymphedema. This is essential! She not only resolved the cording issue quickly but provided treatment for weeks after I rang that bell! I seldom had pain and was able to establish almost full range of movement. She was able to get me a compression sleeve and gauntlet through my insurance and provided me with a lifetime plan of daily exercises and tips that feel good and only take a few minutes to insure I keep motion range and ward off lymphedema outbreak. All this to say if your daughter doesn’t receive PT or her therapist isn’t specifically trained to work with breast cancer patients, she needs to ask for it! Best of luck! Mom’s are one of our best advocates! Pat on the back to you!

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