The Scoop On Lymphedema

Lymph nodes are immune cells that filter out harmful substances in our lymphatic systems.  When a woman undergoes a mastectomy or lumpectomy a doctor may decide to remove lymph nodes that drain from the breasts to help determine the extent of the cancer.  Cancer found in the lymph nodes tends to lead to poorer prognoses.  When lymph nodes are damaged or removed as a result of surgery, radiation, infection or trauma, lymphedema can occur  Lymphedema is the swelling of the arms or legs due to an accumulation of lymphatic fluid.

Lymphedema can occur at any time after lymph nodes have been compromised.  Symptoms include:  persistent swelling of part or the entire arm, fingers and toes, heaviness and/or tightness  in the arms, limited range of motion, aching or discomfort, and in severe cases hardening or thickening of the skin.  If you experience any of these symptoms, please contact your doctor immediately.

There are different stages of lymphedema.  Stage One is known as “Spontaneously Reversible”.  During this stage the skin or tissue indents to the touch.  Stage Two is “Spontaneously Irreversible.”  The tissue in your arms may have a spongy consistency, but does not indent when you touch it.  Stage Three is “Lymphostatic Elephantiasis”.  At this stage the swelling cannot be reversed and limbs will appear large.  The tissue in the arms will become hard.  If left untreated, the swelling will continue to accumulate becoming a breeding ground for bacteria and infections.  Loss of functioning and skin breakdown may occur.  In the most severe cases, a rare lymphatic cancer, known as Lymphangiosarcoma, may develop.

When I underwent my prophylactic bilateral mastectomy I was told by Dr. Campbell that she would remove lymph nodes to make sure there was no cancer.  (Note: It is not common to have lymph nodes removed during a preventative mastectomy, but some doctors prefer to perform the biopsy as a precaution.)  There are two different types of lymph node dissection.  If cancer is thought to have spread to the lymph nodes, the doctor may decide to perform an axillary lymph node dissection.  The number of nodes removed depends on the location of the cancer.  This procedure is the most invasive.  A sentinel lymph node dissection removes the first few nodes that filter the fluid that drains from the breast.  These nodes would most likely be the first to contain cancer if it has spread.  If cancer is not found, then it is unlikely the cancer has spread.

On the day of my mastectomy a nurse came to explain the sentinel lymph node dissection to me as this is the procedure that Dr. Campbell would perform.  The nurse injected each breast with blue radioactive liquid four times.  (It didn’t hurt nearly as bad as the epidural needle they use during labor!  Side note, the blue dye turns your urine blue for a few days.)  The liquid drains towards the lymph nodes and lights up a path for the surgeon to find the sentinel nodes.  My surgeon only took five or six lymph nodes, but the number of nodes taken can be as high as thirty.  The lymph nodes are sent off to a pathology lab for analysis.  I am happy to say that my lymph nodes can back free of cancer!

As mentioned before, if you have lymph nodes removed or receive radiation around your lymph nodes you have a lifetime risk developing lymphedema.  However, there are preventative measures you can take to lower your risk.  After my mastectomy, it was very important to rest my arms and avoid any strenuous activity, but my plastic surgeon told me to begin arm exercises early on.  Raising my arms out in front of me, out to the side, over my head and doing shoulder rolls were great ways to gain my range of motion back.  Not only would it help prevent frozen shoulder, but it also encourages movement of the lymphatic fluid.  I had very limited range of motion in the first few weeks following my surgery, but by continuing with my exercises I now have complete range of motion back.

It’s also important to protect your arms and avoid cuts, burns as scrapes.  Since lymph nodes may have been removed during surgery or damaged during radiation, your lymphatic system may not be as strong as it once was, therefore not able to filter out any harmful bacteria that could lead to infection.

If you’ve had a large number of lymph nodes removed, your doctor may tell you to avoid having a blood pressure reading in that arm.  I always remind doctors that I’ve had lymph nodes removed on both sides.  Some doctors may want to take a blood pressure reading from my leg, however my breast surgeon says that since she only removed a small number of nodes, an occasional reading on my arm won’t do harm.

If you travel by air or are exercising, wear compression arm sleeves.  I received my first pair in the mail last weekend.  The cabin pressure in an airplane can cause increased swelling in your arms.  When exercising, especially in heat, your arms and fingers may begin to swell also.  The idea behind compression arm sleeves is help circulation and prevents swelling.

If you are experiencing any of the symptoms mentioned, please reach out to your doctor.  For more information on lymphedema, please check out the following links:

www.lymphnet.org
www.mayoclinic.com