Understanding Lymphedema

Updated: Nov 12, 2020

It can be overwhelming attending doctor appointments week after week with a plethora of information thrown at you each time, new vocabulary, new side effects to worry about, and additional risks all come flying at you at warp speed.

I always came prepared to my appointments with a note pad and pen taking copious notes, and asked for correct spellings of technical terms, knowing I would come home and google absolutely everything! Often times, our discussions in the oncology office revolved around discussing the various approaches to treating my cancer along with weighing the benefits and risks.

About one year ago, as we were discussing my surgery options, my nurse came in and handed me this pamphlet and said we should talk about Lymphedema. My head was already spinning as I was nervous about my upcoming surgery and like a deer in headlights, I now had to worry about this potential risk?

While having lymph nodes removed does not always result in developing lymphedema, it quickly became clear that this was something I would need to look out for and manage for the rest of my life; it is something that can develop immediately after surgery, or even months or even years down the road.

My only real experience with lymph nodes were usually associated when my primary care physician was checking if I had any swollen glands around my neck and to ensure I didn’t have strep throat. I was pretty clueless about the lymphatic system, how it worked, and the benefits it has on the body.

What is the Lymphatic System?

The basics:

Our bodies have a network of lymph nodes and lymph vessels. This system collects and carries a watery, clear lymph fluid, much like how veins collect blood from distant parts of the body and carry it back to the heart. This fluid consists of proteins, salts, and water, as well as white blood cells, which help fight infection.

The Causes:

Lymphedema is most commonly caused by the removal of, or damage to, your lymph nodes as a part of cancer treatments. It results from a blockage in your lymphatic system, which is part of your immune system. The blockage prevents lymph fluid from draining well, and the fluid buildup leads to swelling.

According to the National Cancer Institute, anywhere from 5-17% of women who have sentinel lymph node biopsy develop lymphedema. Among women who have axillary lymph node dissection, the percentage is higher — from 20-53% — and the risk increases with the number of nodes taken out. Not surprisingly the risk is even higher if you receive radiation to the breast, chest, and under the arm area.

My Story with Lymphedema:

As things are shaping up, I shouldn’t be surprised that I was a prime candidate for developing lymphedema. I had an auxiliary lymph node dissection resulting in 16 lymph nodes being removed, as well as 30 rounds of radiation!

Prior to my surgery, my oncological team took baseline measurements using the L-Dex machine. If you are having any lymph nodes removed, I highly recommend to ask your care team about getting baseline measurements taken. This will allow you and your team to catch any changes post-surgery and catch lymphedema early if it is developing (sometimes swelling isn’t obvious to the naked eye). The procedure is painless and only takes a few minutes. It’s worth it!

After surgery, things seemed to be going well and I thought I was in the clear until one day I started to notice the following symptoms:

· Heaviness in my arm

· Tingling in my fingers (that sense when your arm falls asleep)

· Discomfort raising my arm above 90 degrees

· and I started to notice my watch and rings were no longer fitting comfortably.

I looked down, and my hand definitely looked swollen, I was developing stage 1 of lymphedema.

While lymphedema is not curable, it is manageable (phew). I took matters into my own hands and called my hospital to schedule an appointment with a lymphedema specialist. I’ve been seeing my specialist now for 4 weeks and the improvements are profound! It was recommended that I wear a compression sleeve daily, even during my workouts to help reduce swelling.

Additionally, I do lymphatic massage (also known as manual lymph drainage (MLD)) twice a day. The lymphatic massage plays a crucial role of rerouting stagnated lymphatic fluid. The goal is to stimulate the lymph vessels and lymph nodes and to redirect the lymph flow around these blocked areas into more centrally located healthy lymph vessels and nodes.

At night, I do not wear my compression sleeve, but rather, I wrap my hand to prevent swelling.

While my bedtime routine is now about an additional 30 minutes to account for managing lymphedema, I have to say, my arm feels so much better and I am confident that I will remain at stage 1 so long as I continue to take care of my skin, arm, and manage the swelling!

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