Why I Advocate During Lymphedema Awareness Month

I was frustrated when I developed lymphedema after my 2014 breast cancer surgery, but have since turned those negative feelings into advocacy for others who may be affected by the condition, too.

After having both breasts removed in 2014, I never dreamed I’d suffer more trauma to my body. Weeks after surgery, I noticed an abnormal swelling in the armpit area.

The breast surgeon had removed lymph nodes in each of my arms after tests revealed cancer in the sentinel node, but I had no idea how much the removal of those nodes would affect my health. The swelling continued to worsen and I began to be concerned, so I made an appointment to see the doctor.

Upon examination, she said I’d developed a condition called lymphedema. I’d never heard the term before and asked for an explanation. The doctor explained, upon removal of the lymph nodes, my lymphatic system had been disrupted causing an abnormal backup in the flow of lymphatic fluid. That accumulation of stagnant fluid caused swelling, pain and discomfort. Though she did her best to explain clearly, it seemed Greek to me.

When I returned home from that visit, I began to research lymphedema. The information I discovered was complicated and overwhelming. As I read through the medical jargon, I began to take notes breaking down a very large elephant into bite-sized pieces.

I learned the lymphatic system covers the entire body. Its purpose was to move a clear or straw-colored fluid filled with waste products to the circulatory system for proper removal. The body’s filtration system, when damaged, can’t dispose of the waste products so it collects in various areas of the body.

I also learned that the arms and legs are the most commonly affected, but lymphedema can also occur in other parts of the body such as the trunk, chest, back, neck or shoulders. The literature explained that lymphedema can be mild or severe and can lead to more serious complications such as cellulitis, which is a dangerous skin infection, or lymphangitis, inflammation of the lymph vessels.

It turns out that lymphedema, according to the research, is fairly common after breast cancer, though I’ve noticed that many women aren’t aware of it because their doctors might not have discussed it.

For those who may be unsure, experts note that the signs of lymphedema include painfulness, swelling, a feeling of fullness, heat or discomfort.

Research shows that there are many treatment options for lymphedema all of which can help a patient manage the condition, such as manual lymphatic drainage. This procedure involves manually moving the lymphatic fluid through the body by external massage. Experts say that wrapping affected extremities can help prevent fluid from collecting and compression garments can help patients deal with range of motion issues from uncomfortable swelling. There are also electric compression pumps that are programmed to push fluid through the body by varied air chambers filling and releasing air along extremities.

I use a variety of treatments to help manage lymphedema. Daily, I perform manual lymphatic drainage. I wear compression garments, and spend 30 minutes to an hour in a compression therapy machine. Though the treatments help, they will never cure the condition. It is extremely frustrating to realize this is a lifelong condition. My frustration led me to become an advocate for lymphedema awareness.

Wondering what I could do to help, I contacted the Lymphedema Treatment Act. Through their site, I learned about the Lymphedema Treatment Act and found many advocacy tools to help push that bill forward. I made a point of reaching out to my state representatives explaining the difficulty I had getting insurance to approve an electric compression pump prescribed three months after surgery.

After several claim denials from the insurance company, I finally asked my doctor to write letters and include documentation proving the equipment was medically necessary. Months passed before I finally received approval. I felt ostracized because of my medical condition and didn’t want others to experience the same thing, so I decided then and there to do whatever it took to help push this bill through. I wrote my state representatives and members of Congress. They responded favorably when I asked for their support of the proposed bill. It felt good to be an advocate for lymphedema awareness.

March is Lymphedema Awareness Month, and March 6 has been designated as Lymphedema Awareness Day. Currently, the Lymphedema Treatment Act (LTA) is on the table once again. This bill has been chartered to provide rights for those suffering from lymphedema. Many insurance companies do not cover medical necessities such as compression garments, massage, or compression machines related to lymphedema. The LTA proposes that all affected by lymphedema receive necessary medical care and equipment.

The bill was passed by the House during the last Congressional session, but due to the COVID-19 pandemic, it has yet to be presented to the Senate.

Every two years, when a new Congress convenes, bills must start over. (Progress from previous years does not carry over.) Also, this bill is for a small population (compared to other health care-related bills) and wouldn’t normally be voted on as a stand-alone bill. Usually, this type of medical bill is bundled in with a larger bill and finding the most appropriate bill to tie it into is difficult.

One of the best ways to help the bill pass is for more awareness and more co-sponsors to become involved. Survivors of breast cancer and those affected by lymphedema can do their part by contacting their state representatives or members of Congress. The LTA has a website with many free resources and advocacy tools available.

Popular actress and fellow breast cancer survivor, Kathy Bates, has done her part to bring awareness to lymphedema as the national spokesperson for the Lymphatic Education & Research Network (LE&RN). I’m thankful she’s decided to take a stand.

Lymphedema can affect a person physically and mentally. That suffering shouldn’t be compounded by insurance companies refusing to approve medically necessary treatment or compression garments. It’s time to advocate for our rights. Will you join me?

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.