• CrazyHarry's Avatar

    CrazyHarry asked a questionBreast Cancer

    Hey breast cancer fighters and survivors! Help me with Lymphodema

    4 answers
    • Bug's Avatar
      Bug

      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.

      3 months ago
    • Dina's Avatar
      Dina

      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/).

      3 months ago
    • tlalex's Avatar
      tlalex

      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!

      3 months ago
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    CrazyHarry shared a photo

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    Hey cancer survivors and battlers. It’s been a while since I updated you all.

    I’m now 7 years free of butt cancer and 6 of thyroid. No more CT scans or US. Checking in once a year with the oncology department have my annual mammogram at least once every 2-3 years.

    I went through a rough patch at the start of the year, unemployment combined with this covid thing really pulled that gray cloud into my life. I did get a great job in May, but I spent Most of the time enjoying some pretty bad food choices. Had some bad sciatica and needed surgery. Which required a preop. Which revealed to my doc that I was super sweet. And then when my blood sugars turned in some quite impressive numbers during the surgery, I was forced to face the fact that all of this destructive eating had finally caught up with me.

    Took a few weeks to turn it around and I’m now on my way to a much healthier me. Don’t worry, I still have plenty of chins left. And ample protective layer.

    No travel plans, no going out, etc. But me and the wife are enjoying experimenting with cooking, playing games, etc.

    And in conclusion, if you are fighting the dreaded disease I hold you all in the highest esteem and sent along only the best wishes for a positive outcome.

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    CrazyHarry asked a questionBreast Cancer

    Lymph Node Mapping

    4 answers
    • ChicagoSandy's Avatar
      ChicagoSandy

      A lymph node “lighting up” means it’s the “sentinel” node—one of the first in the chain to which malignancy CAN spread IF there’s spread. Doesn’t mean it contains malignant cells, however (in most cases it doesn’t).Was the node removed and/or biopsied? Sure hope so. Chances are it was not malignant. If it was, then the diagnosis of DCIS changes to invasive ductal carcinoma (IDC) and is treated accordingly (usually with at least radiation; and endocrine therapy if hormone-receptor-positive; chemo is rare in such an instance).

      over 1 year ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      DCIS that is re-diagnosed as IDC after mastectomy & sentinel node biopsy almost never progresses beyond Stage I.

      over 1 year ago
    • fluteplayer's Avatar
      fluteplayer

      I had NO lymph nodes involvement but still had it come back 10 years later in stage 4 . My friends had lymph nodes light up and still cancer free so it doesn't matter,its all up to God.

      over 1 year ago