Lymphedema: Balancing Awareness and Fear

Patient Expert

March is Lymphedema Awareness Month, but when does awareness cross over to fear?  How can breast cancer survivors inform themselves about lymphedema without being paralyzed with terror?  Most breast cancer patients have heard that their treatment puts them at risk for this condition which causes swelling, but many have little knowledge about what it is or how to reduce their chances of getting it.

The lymphatic system is a part of the body’s immune system.  A series of vessels carry lymph fluid through the body to help fight infection.  When something happens to disrupt this system, like radiating or removing the lymph nodes under the arm to treat breast cancer, the fluid may not circulate properly and can build up in the arm or trunk.  Without treatment, the swelling can become permanent and the area will be more susceptible to infection.

I’ve known breast cancer survivors who are surprised that I have lymphedema. “My surgeon told me that doesn’t happen anymore,” one friend who had recently completed treatment told me.  Her surgeon needed some lymphedema awareness training.  According to the National Cancer Institute, eight to fifty-six percent of breast cancer patients will develop lymphedema—eighty percent of those patients within three years.

Why the discrepancy in statistics?  It depends on how long the study followed patients and how swelling was measured.  It’s not surprising that a surgeon who may follow a breast cancer patient for only a year might think lymphedema isn’t a problem because lymphedema can develop years after treatment.  Another reason for the difference in statistics is the definition of lymphedema used.  A person who has swelling in only her hand or side might not fit the measurement criteria of one study, but might in a different one.

I have also known women so terrified by lymphedema that they consider asking their doctor not to sample lymph nodes during their surgery.  These women have either known someone with uncontrolled lymphedema or have seen pictures of grossly contorted limbs in advanced lymphedema.  They have seen the words “permanent” and “disabling” that often are attached to the condition.  They are surprised that I don’t need to wear bandages or a sleeve every day and that I often go for months without any swelling.

There is a balance between thinking that lymphedema is a thing of the past thanks to better surgical techniques and feeling that one is doomed to have a grossly distorted arm following breast cancer treatment.

Risk factors

All breast cancer patients and anyone else who has radiation and/or surgery in areas rich with lymph nodes need to know that they are at risk for lymphedema.  The more lymph nodes removed, the greater the risk, so patients should ask if they are candidates for sentinel node surgery where just one or two nodes are removed.  Radiation to the lymph nodes increases risk. My lymphedema therapist told me that she has treated women who were surprised that their choice of lumpectomy plus radiation created a lymphedema risk factor.  They wished they had that information when they were trying to decide between a mastectomy with no radiation or lumpectomy with radiation.  Being overweight is another risk factor.  The more risk factors a person has, the more proactive she needs to be in preventing it.

Strategies to prevent lymphedemaWhat are some practical things a person can do? ** The basic principle is to** protect the lymph vessels.  Don’t do anything that compresses them like carrying a purse on the affected side or a heavy backpack.  If your cancer surgery was on the right side, be sure that the nurse takes your blood pressure on the left side.

The lymph system fights infection by sending lymph fluid to cuts and burns, but that fluid may have trouble getting back out of the arm after rushing to a cut.  Therefore, protecting the arm on the cancer side is especially important.  Wearing gloves when gardening, being careful when cooking, and using an antibiotic ointment immediately if a cut does occur are ways to reduce the possibility of swelling.  Have blood draws and IV’s on your non-affected side.

Lymph fluid is moved through the body by the contractions of muscles, so moving around frequently helps keep the fluid from pooling in one place.  I’ve noticed that I tend to have swelling after long car rides, so I have learned to make a conscious effort to move my arm and even keep it elevated when possible during road trips.

While movement is important, finding the right balance of exercise and rest is important too.  Breast cancer survivors used to be told to avoid repetitive arm activities like ironing or weight lifting.  Lifting anything more than five pounds was a no-no.  Now careful exercise is recognized as beneficial, but it is still important not to exercise to the point of fatigue.  A consultation with a physical therapist familiar with cancer treatment issues is a good idea before starting exercises involving the arms.

Be alert for symptoms

Paying attention to your arm is important so that you can get treatment right away if swelling starts.  Your arm may feel heavy.  It might ache.  A ring or bracelet might feel tighter than usual.  Often the swelling is so slight that at first you aren’t even sure if one arm is larger than the other.  What I noticed was that the little wrinkles in my wrist had disappeared.  Sometimes the arm feels spongy and pressing on it leaves a pit.

These changes mean it is time for some healthy fear.  Lymphedema will not go away if you ignore it.  You must be evaluated and treated right away.  Ask your doctor for a referral to a therapist trained in lymphedema management.  Usually this will be a physical or occupational therapist with special certification in lymphedema treatment.

Having lymphedema has changed my life.  I have to be careful not to overuse my arm.  I use a lymphedema pump at home and finding time for that can be a challenge. Sometimes I need to wear bandages or a compression sleeve for weeks at a time, and I always need to do so when I fly or exercise.  When I have flares, I sometimes need to see a therapist several times a week for a while—not the way I want to spend my money or my time  It hasn’t bothered me to give up ironing, but being extra careful to avoid mosquito bites and sunburn has curtailed time I used to enjoy in nature or swathed me in hot long-sleeve shirts.

Seventeen years into it, lymphedema is something that I manage, but it isn’t the terrifying permanently disabling condition I feared when I first noticed those little wrinkles disappearing from my wrist.  Cancer treatment has saved my life, and I’m glad to be here during Lymphedema Awareness Month.

For Further Reading:

Flying with Lymphedema

Lymphedema Pumps to Use at Home

Lymphedema:  Evolving Research Lifts Restrictions

Study Finds Exercise Help Lymphedema in Breast Cancer Patients

The Lymphedema Treatment Act:  Celebrate Lymphedema Awareness Month by Contacting Congress

Resources:

The Lymphatic System.  2012.  LymphNotes.com.  Accessed from http://www.lymphnotes.com/article.php/id/151/ March 22, 2016.

National Cancer Institute: PDQ® Lymphedema (Patient Version). Bethesda, MD: National Cancer Institute. Date last modified May 29, 2015. Available at: http://www.cancer.gov/about-cancer/treatment/side-effects/lymphedema/lymphedema-pdq. Accessed March 22, 2016.

National Cancer Institute: PDQ® Lymphedema (Health Professional Version). Bethesda, MD: National Cancer Institute. Date last modified July 17, 2015. Available at: http://www.cancer.gov/about-cancer/treatment/side-effects/lymphedema/lymphedema-hp-pdq. Accessed March 22, 2016.