Lymphedema Awareness after Breast Cancer

March is Lymphedema Awareness Month.  I deliberately posted this on the last day of month because we all put Lymphedema at the end of the line in Breast Cancer.   As someone who lives with the realities and challenges of Lymphedema every day,  I am passionate about warning Breast Cancer Patients to PAY ATTENTION and get help and information about Lymphedema.  Now that my sister has recently finished active treatment for breast cancer and had many nodes involved, I am constantly warning her about Lymphedema!

Make sure you have attended a Lymphedema Class and  arranged a consultation with a Lymphedema Therapist immediately after breast surgery.  Preventative actions, treatment and knowing what to look for can help your future in a big way.    

If you even have had one lymph node removed, you can get Lymphedema. Surgeons and Oncologists may tell you otherwise.  Do not listen to them!  I have had plenty of letters from women who had been told, “Don’t worry, you aren’t at risk for Lymphedema” by a physician and then BAM!  Lymphedema hits in full force.  Some women have gotten this condition with no nodes removed, but that is more rare.

At the very LEAST, your preventative measures should include 1)  Wearing a fitted compression sleeve when you fly in an airplane – even for short flights;  There is other information out in googleland to the contrary.  Do not listen to it.  I have met two women who have full-blown Lymphedema after a quick air flight.  One had been 20 years out of cancer treatment!   2)  When you are lifting heavy items or moving heavy items, make sure to wear a compression sleeve.   3)  Lots of repetitive motion like shoveling snow, sweeping, mopping could be cause to wear a compression sleeve.  Pretending Lymphedema cannot happen to you does not work!

I got full-blown Lymphedema after lifting three heavy plastic grocery bags with my “bad” arm.  And I had been to all the classes and visited a Lymphedema Therapist.  That is all it took to bring it on and cause me to wear a compression sleeve and often a gauntlet every day for the rest of my life.  Here is a previous blog post I wrote about Learning to Live with Lymphedema that gives more information: https://denise4health.wordpress.com/2013/02/11/learning-to-live-with-lymphedema/

The following 10 minute, professional video entitled, “Breast Cancer’s Dirty Little Secret”  does a wonderful job giving more information about Lymphedema.  It is definitely worth investing the 10 minutes to watch!

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10 thoughts on “Lymphedema Awareness after Breast Cancer

  1. Thank you for posting this. One of my frustrations is finding a facility that has the bioimpedance spectroscopy in their facility. It still is not readily available as many facilities do not want to put the money into acquiring one. I live near a large metropolitan city and still have trouble locating a place that can do the testing.

  2. Thank you Denise for your unceasing efforts to educate ALL women about cancer treatments and the dangers that lurk behind the diagnosis. You are an angel to care so deeply about educating women on how to seek out the best treatment available and how to look out for the dangers that may lie ahead.
    Love, Auntie M

  3. Wow! I have to admit, I had no clue. I thought it was something that happened right after treatments or not. Since I didn’t develop lymphedema, I assumed I was in the clear. Thank you for sharing this information. I’m so sorry you are having to deal with this every day.

    • Oh so good to hear from you!! I KNOW, most women don’t know
      they are still at risk for Lymphedema years later. My radiation nurse
      got Lymphedema after a 1.5 hour flight from Ohio to New York City after
      being a 20 year survivor!! Crazy but it happens!

      • Thank you, Denise. Your information has been so helpful to me. I may be flying this summer for the 1st time, so I am now going to get a compression sleeve to wear. I was wondering also, if I should wear it when I work out? My husband recently bought workout equipment and I had started using it just to tone up.

  4. I wanted to share something my lymphedema therapist suggested… Solidea Active Massage garments (Google search Solidea Medical, the company was founded by a BC survivor with lymphedema). They have individual sleeves (with silicone threads at the top– easier on my arm than the silicone bumps of other sleeves) but also bilateral sleeves (it doesn’t hurt your unaffected arm to be sleeved because they aren’t compression sleeves) that go around your upper back, eliminating the muffin top that accompanies most compression sleeves. (Lymph can pool at the upper arm by the shoulder with most sleeves, and my therapist told me I should use kinesio tape to direct lymph from there whenever I wear a sleeve.) These Solidea garments take care of that problem. They are more comfortable to wear also (and much easier to put on) because they are not so tight… they rely on the inner grooves to give continuous “micro-massage” as you move around, directing the lymph up and away from the limb, instead of compression. They aren’t for severe cases of lymphedema, but for someone like me who is trying to prevent swelling, they are WONDERFUL! I love that my therapist shares new things she learns (my first therapist didn’t!). She has given me so many tools to use– like teaching me how to kinesio tape effectively, in addition to sleeving, night garments, Flexi-touch pump, MLD, etc.

  5. Hi Pam, thanks for the reminder about this! My LE Therapist told me I should try these and just never did! Based on your review, I will definitely give them a try. THANK YOU for being thorough about this. Makes sense. I ALWAYS have pooling in my upper arm…
    THANKS AGAIN!!!

    • You’re welcome. I was just so happy to find these that I wanted to share.
      I’m going on an overseas trip next month and was really worried about how uncomfortable a compression sleeve was going to be (with the layover, I’ll be traveling for 15 hours) and how was I going to sleep on the plane with it… would the tight sleeve cause a “tourniquet effect” as I slept kinked up? I think the Active Massage garment will work well. I messaged the company founder and she said she uses these garments when she flies.
      Thanks!

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