Lymphedema (or My Life in Tights)

As a new nurse, working at a long-term care facility, I quickly became acquainted with compression stockings.  These stockings help decrease extra fluid and swelling.  One morning, one of the residents rang the bell to his room requesting assistance.  I answered, and found him sitting on his bed with a pair of white knee high pantyhose next to him.  Compression stockings.  He asked if I could help put them on his legs.  They were very tight, tricky to maneuver, and after about thirty minutes of pulling, tugging, and contorting, they were finally in place.  Whew.  I felt like I had just run a short marathon and the poor man looked like he felt the same way.  The next morning I dutifully answered his bell.  He took one look at me and sighed.  He needed help with his stockings again.  “Is there anyone else around?” he asked sadly.  He didn’t want a repeat of the day before.  Little did I know then that one day I would be using these special tights myself.

Long lasting swelling following cancer treatments may be related to lymphedema.  Lymph nodes are sometimes removed for testing during cancer surgery or may be damaged during radiation treatments.  My Physical Therapists refers to lymph nodes as the body’s “vacuum cleaner,” they suck out the bad fluid (Amy Taggart, PT & Lymphedema Specialist with Bassett Health Care).  If lymph nodes are impaired, it is difficult for lymph fluid to be removed from the body.    The resulting swelling is called lymphedema (edema = swelling).  It may occur right after treatment, or not show up until months later. 

I started experiencing lymphedema two to three months following completion of my treatments.  It started gradually in my lower extremities and abdomen and then became worse, with increased pain, especially in my ankles and knees.  Others may experience it in their arms, perhaps following treatment for breast cancer.  I do not want to scare cancer survivors with terrifying stories of complications and side effects, but I do want to get the word out that there is help.

Lymphedema is a permanent diagnosis, however the good news is it is treatable.  I was fortunate to receive lymphedema therapy soon after my own diagnosis.  I had an initial evaluation with the therapist and was scheduled for therapy three times per week.  I told my husband I was going to be working hard every Monday, Wednesday and Friday at PT.  At my first appointment I received a very relaxing, almost hour long light massage.  I nearly fell asleep.  Following the massage my leg was wrapped in something similar to a soft cast which I wore until my next appointment.  My PT said I would look and feel like the Michelin Man, and I did.  This continued for four weeks: relaxing massage and then Michelin Man wrap.  The first week my pain significantly decreased.  After four weeks, my leg circumference decreased by over two centimeters, and much of the lower leg pain was gone.  After the massage therapy I received my very own pair of thigh high compression stockings which I wear during the day.  My stockings are skin tone, but they are also available in white, or a fish net pattern, or with tattoos – might as well have fun with it!  So now I wear a permanent pair of pantyhose, but it is worth it.

This form of therapy is fairly new.  If you have swelling, or have a known diagnosis of lymphedema, talk with your oncologist or radiologist.  Ask about lymphedema therapy.  It may be a great option for you!