Lymphedema, Lymph Nodes and Breast Cancer

Lymphedema is a dreaded word for women who have had lymph node involvement  and removal during their Breast Cancer.   Lymphedema is described as:   “Lymphedema occurs when the lymph system is damaged or blocked. Fluid builds up in soft body tissues and causes swelling. It is a common problem that may be caused by cancer and cancer treatment.  Lymphedema can cause long-term physical, psychological, and social problems for patients. ”

I am one of them.   Some women have difficulties right away, others have none or it can hit years later.  Mild Lymphedema happened to me immediately, then got progressively worse.  I had 14 lymph nodes removed.  The greater the amount of lymph nodes removed, the greater risk for Lymphedema.  Before I sought treatment, my arm would be 1 to 2 inches larger around than my other arm.

At first Lymphedema is just another overwhelming thing to think about and deal with when you are already on overload with Breast Cancer and treatment.  But with appropriate care, it truly can become a manageable situation.  My Lymphedema is under control since I have learned how to self-massage, wear my sleeve or wrap my arm when I fly in an airplane or do repetitive work (like gardening, trimming trees, raking, shoveling snow, using the sweeper, heavy cleaning and lifting, etc.) I also see a Lymphedema Therapist/Specialist two to four times monthly for massage and treatment.

Recently, I met two women who began suffering with Lymphedema after no one told them it was necessary to wrap your arm or wear a Lymphedema Compression Sleeve when flying. One was a nurse who was a 10 year Breast Cancer Survivor.  She thought after all that time she would not be afflicted.  The other woman was less than one year out from surgery, but no one told her about compression and flying in an airplane.   So if anyone tells you that you don’t need to do this while flying, don’t believe them!  There are studies out there that say it is not necessary.  But these women certainly convinced me!

Here is my advice:

1)  Find a Lymphedema Class – many hospitals and Breast Cancer Centers offer these classes to educate patients at risk for Lymphedema.  I have attended two free classes at two different hospitals, and the information given was invaluable to me. If you live in a small town, call the largest hospital or breast care center in the closest larger city.  It would be worth the trip to attend a class.  If they don’t have a class scheduled, ask them if they would consider having one.

2)  Locate a Certified Lymphedema Specialist – I found mine at my local hospital.  She is a gem and has given me so much knowledge and help!  Call the Physical Therapy departments at local hospitals to see if they have one.  Unfortunately, there is not an internet central registry that I am aware.

3)  If you have trouble locating a Certified Lymphedema Specialist, contact your local Breast Cancer Support group or ask your Oncologist or Surgeon.  Don’t expect your Oncologist or Surgeon to tell you – they may not even talk about Lymphedema to you.

3)  Check if your insurance company will pay for visits to a Lymphedema Specialist – mine are covered under Occupational Therapy.  If it is not covered, find out if you can affordably visit a Lymphedema Specialist to answer questions, teach you self-massage, and exercises.

4)  Do your self-massage daily or when needed.

5)  Do your exercises daily.  I was given a list of exercises by my Lymphedema Specialist and try to do them faithfully.

6)  If you are going to undergo Radiation Treatment, your body becomes even more sensitive to Lymphedema.  My hospital provided a massage therapist to help the lymph system during this time.

7)  Have your Lymphedema Specialist measure your arm, or if you can’t afford one or if insurance does not pay, keep regular measurements of your arm.  Measure your hand, your wrist, midway between wrist and elbox, and 2 places in upper arm.  Compare these measurements with your unaffected arm.

8)  If you are going to fly in an airplane, even short trips, it is necessary to wear a compression sleeve or wrap it correctly.  If you have a 2 hour plane trip, you are to wear the sleeve or wrappings for the duration of the plane trip, then for 2 hours after you land.

If you are prone or suffering from Lymphedema, it is necessary to prevent infection in that limb.  For example, wear gloves when doing yard work, wear insect repellant to avoid insect bites, and carry anti-bacterial or neosporin with you if you get a cut.  You want to avoid infection that could lead to cellulitis or something even more serious.

Lymphedema has become a way of life for me.  I elevate my arm when I sleep which helps me.    And since I am a gardener, I have finally learned my lesson.  I usually get a cutter in my hand and before I know it, the tree or plant is trimmed.  Not any more.  I have suffered enough after these episodes, so I wear my sleeve now!

If you are overwhelmed by it all, don’t despair.  It does get better with knowledge, education and time.  There is hope and healing for this misunderstood challenge.

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10 comments

  1. Thanks Denise! I just got mild lymphedema two weeks ago and have met with a lymphedema specialist. Were you told you had to wear the compression sleeves all the time? Also, I wasn’t given any exercises to do. What type of exercises are you doing? Thank you so much!

    • Hi Ruth, everyone is different as far as the compression sleeve. Be sure to
      ask the specialist – and also ask him/her about the exercises. I wish I could
      give you more clear answers, but each case is very different.
      I wear my sleeve when Lymphedema is acting up or if I am doing things that
      will make it act up. It is challenging. Here is a great short video to
      show you some stretches: http://www.youtube.com/watch?v=VhXxQyVdmfk

      • Thanks Denise!!! I always check in on your blog to see how you are doing. At my support group last night, I gave a fellow survivor a printout of “Learning to Live With the Fear of Cancer Recurrence” as your words really touched me when I read them.

  2. I just found your blog. Your articles on LE are great. I really enjoyed the one where you talked about lifting all the grocery bags. That was the culprit for me. I had mild LE for about 12 years. I did everything wrong. Worked in the yard, housework, am an artist, walked a 70 pound dog pulling his leash using my LE arm, moved furniture, even carried a heavy purse on that side. Now I am 14 years out from diagnosis, and I lifted grocery bags with 2 ltr bottles in them, and reached up and pulled the hatch down on my car to close it. Very bad move on my part. I didn’t want to make a second trip. Mine started under my arm which freaked me out, and has now progressed into my breast and trunk area, and it goes down my arm into the hand. I had 10 lymph nodes removed in 2001. I am here to tell everyone LE can rear its ugly head anytime!

    • OH MY – thank you SO MUCH for posting! It is a good reminder to everyone who is years out
      to still take precautions! I am soooo sorry the grocery bags did it for you as well. I just
      had this talk with my sister last night who had many nodes removed and is in chemo now and
      warned her about grocery bags once again.
      I am hoping you are getting treatment with a Lymphedema therapist now. I want to give you
      some hope that it can and may get better. My trunk area and hand have almost gone away, but
      my arm is a constant work in progress, and I must wear a sleeve everyday.
      Thank you SO MUCH for writing. And I am going to pass your post onto many!!
      My best, Denise

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