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Lymphedema. What is it?

I tend to sit diagonal at my desk, so that I could face my client, but still have enough desk left to write down the comments or concerns of my client. “They said I have lymphedema, but I don’t know really what that means. What do I need to do to make it go away.”

Lymphedema. I have heard this word pronounced in many ways, with “lymphoma” being one of them. The fear or anger that women would have on their face as they described another condition after having gone through breast cancer treatment was explicit. Didn’t the diagnosis and the treatment assault their emotions, body and relationships enough already?

Lymphedema, is not a rare side effect, but can often feel that way to the client. The condition is given a few sentences dedicated to it in the description of risks during breast cancer treatment. It is not a condition that will change a person’s lifespan, and it is not contagious. However, it is progressive, and can further alter the physical terrain of a person. And for women in their 30’s, 40s and 50s, this means they have 30, 50 or 50 years to still deal with this.

There are a lot of questions surrounding this condition, and I will answer the most common questions below.

What exactly is lymphedema?

So, our bodies typically have another superhighway of connections called the lymphatic system. It runs alongside, and interweaves along the circulatory system. But, the interesting this is, it runs superficially and well much deeper along our internal organs. Because it has such an extensive reach in our body, it becomes very important for doctors wanting to make sure that cancer cells are not spreading use this system. This is why, doctors will often look at lymph nodes, and even collect a few when doing surgery to examine whether or not cancer cells are present.

What does this have to do with lymphedema? Well, the lymphatic system is extremely sensitive to internal and external factors. So, when a surgery occurs, and certain parts of it are disrupted. An analogy is frequently used road made of asphalt, that there only ever is enough budget to fill in the cracks. The road is technically useful, but it is incredibly bumpy and tests the quality of your suspension system. The drainage off the road is inadequate, and there are frequent puddles of water that remain in place days after a rain. This is similar to an area of the lymphatic system. The system still functions, but there are puddles, or backflows of “lymph.”

This buildup is commonly discussed as presenting in the arm, but it starts in the trunk. This means that most women will notice a swelling, or a “poof” near the site of their surgery. This can and does happen in women who have gone through a lumpectomy or a mastectomy. There are still lymphatics present in that area, that have been traumatized (through surgery and/or radiation) and now are more “leaky.” This can lead to the sensation of heaviness, fullness, and even pain.

Just like that road will not improve without an intervention, neither will that portion of your body affected by lymphedema. There has to be some sort of intervention, and this typically comes in the form of visiting your therapist (physical or occupational) that is a certified lymphedema therapists.

These are therapists that have additional training (a minimum of 135 hours) of additional book and hands on training. In actuality, there is so much more training that is necessary to feel comfortable discussing the conditions and emotions that our clients have.

What can be done once it is diagnosed?

Honestly, that initial evaluation can be full of information, and often overwhelming. As a therapist, we really want to get to know you. We want to learn more about your function, your daily activities and what goals you have.

Depending on your therapist, they may also complete an examination during that visit. This will include observing your shoulder blade movement as your raise and lower your arms. We will complete measurements of your arms with an old-fashioned tape measure at specific points along your arm (unless you have a clinic with much more financial backing, more advanced techniques will be used!). The one tool that every therapist has that is irreplaceable, is our sense of touch. Your therapist will be able to palpate different parts of your trunk and arm and be able to tell if there is some change in your lymphatic system. The look and feel of skin that has been affected by lymphedema is quickly noticed to trained eyes.

A treatment plan will be organized with you. There are four main elements that are used, and that is skin care, exercise, manual therapy and compression. The amount of focus on each of these areas is different from person to person, but is going to discussed with you and your therapist.

Finally, we will also discuss risk factors with you. Many of the risk factors discussed are also found in PDF format for the National Lymphedema Network. These risk factors are all-inclusive, meaning that if even one person was affected, it is listed as a possible risk factor. However, if that one person tends to be you…

Just like the road described earlier, if there is no intervention, it will progressively get worse. How quickly it progresses depends largely on how well maintained the road is before an major intervention. The same goes for lymphatic vessels. At this time, lymphedema is recognized as a progressive disease, and our goal is to slow that progress down as much as possible.

I have created a course discussing the Rehab Back to Function, discussing the four pillars of treatment in much more detail, including sample stretches and exercises.