INTERESTING
by Lisa Diebold, MSPT, CLT-LANA
Lympha….what?
I was diagnosed with breast cancer in 2009 at the age of 41. I had surgery-bilateral mastectomy and 22 lymph nodes removed. Within a few weeks of my first chemotherapy treatment, I woke up with decreased range of motion in my left elbow due to swelling. As a physical therapist, I quickly recognized that I was experiencing the onset of lymphedema in my arm. My surgeon and oncologist had saved my life, but I was left with a permanent, visible reminder of my cancer. Believe it or not, breast cancer has brought many blessings to my life. One of those blessings was being motivated to learn more about lymphedema. This led me to seek specialty training and certification in lymphedema. This negative outcome has given me a new focus in my career and the ability to offer understanding, education and treatment to patients affected by this chronic problem.
What is lymphedema? It is a protein rich swelling that develops due to damage to the lymphatic system or a congenital malformation of the lymphatic system during fetal development. The basic function of the lymphatic system involves circulation and immunity. The lymphatic vessels move fluid out of our tissues. Dead cells, protein molecules, bacteria and other waste products are collected. The protein rich fluid gets transported back to the circulatory system. The waste products are sent to the lymph nodes, where they are broken down and filtered. There are many complex activities that take place on the cellular level, especially where the circulatory system and lymphatic system interact. When damage or malformation occurs in the lymphatic system, the lymph vessels cannot transport the lymphatic fluid back into circulation and a chronic swelling may develop.
Lymphedema is not just a problem for cancer patients. Any surgery or injury that impacts lymph nodes or lymphatic vessels can result in lymphedema. The patients I care for have had surgery or radiation for breast cancer, prostate cancer, colon cancer, gynecological cancer and head and neck cancer. Some patients develop lymphedema because of a congenital defect. People with this form of lymphedema may have a noticeable swelling from the time they are young, while others may not show any symptoms until puberty or early adulthood. The final group of patients are people who develop swelling that doesn’t resolve following surgery, trauma or from chronic venous insufficiency.
Lymphedema is a chronic condition that is treatable, but not curable. The goal becomes to manage the swelling in order to minimize the functional impact. Getting a diagnosis of lymphedema is sometimes hard because of the lack of education in this area for our health care providers. The gold standard for lymphedema care is manual drainage techniques combined with bandaging, compression garments and remedial exercise. While all of these components are important to management of lymphedema, they can become overwhelming to our patients and create an emotional and financial burden. Left untreated, lymphedema can cause a limb to grow to a very large size, cause infections, interfere with the fit of clothing and shoes and create distress in the patient.
What is the answer? As a lymphedema trained therapist (who is also a patient), I think the answer is pretty straightforward. Compression garments, bandages, manual lymphatic drainage, compression pumps and patient education are the tools in the toolbox. I present the “in a perfect world” management strategies to my patients. I then try to create a partnership between patient and therapist to determine what a patient is willing to do to treat their lymphedema and what they can afford to do. While this isn’t a perfect solution, I find it works.
Too often in healthcare, we, as providers, tell our patients what drugs they need to take or what equipment they need to buy to manage their condition or that they need to be out of work for a period of time. But do we, as providers, consider or understand how these demands impact our patients? For the lymphedema patient, this isn’t a short term, minor inconvenience. Looking like the Michelin Man with my arm wrapped up in layers of foam padding and bandages was not fun or sexy- it’s hot and bulky and awkward. That lasted a week and cost $150. That was the “aha moment” for me realizing that I needed to figure out what long term inconveniences I was willing to put up with consistently to manage my condition. I figured it out with some trial and error (and another couple hundred dollars). I now try to meet my patients where they are and help them figure out what is likely to work for them, what is doable on a long term basis and what is affordable. Is it perfect? No, but doing something is better than doing nothing.
While the researchers continue to look at ways to prevent and better manage lymphedema , the best we can offer our patients is compassion and practical, real world solutions.
