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.