What is Lymphedema

Among the many side effects you’ll potentially deal with during the course of treatment for breast cancer, one of the most unpredictable, intractable and difficult to address is lymphedema, a chronic condition that can result after surgery and radiation treatment for breast cancer. As The Memorial Sloan Kettering Cancer Center explains, “Lymphedema develops when the lymph vessels in an area are no longer able to carry all the fluid away from the area. If this happens, the fluid can build up and cause swelling.”

In breast cancer patients, lymphedema usually occurs along the arm that’s on the same side where the cancer is located. It can develop any time after surgery or treatment, so it’s something to look out for no matter how long ago you completed treatment. Dr. Roman Skoracki, division chief for oncologic reconstructive surgery at the Ohio State University Wexner Medical Center, says the first symptom is often a feeling of heaviness in the limb. Some patients may also have rings or watch bands that start to feel too tight. Lymphedema is a staged, chronic condition, and over time, it can progress to a noticeable swelling of the hand and fingers and/or the arm and armpit area. As swelling increases, the skin becomes tight, and the site can become inflamed and painful. In later stages, some patients may lose function in the affected limb.

Although it sounds like a relatively simple problem, lymphedema is related to the vastly complex human immune system, and it’s not completely understood why some people develop lymphedema after lymph nodes have been removed or damaged while others don’t. According to the MSKCC, 15 to 25 percent of patients who undergo an axillary lymph node dissection to treat breast cancer will develop lymphedema after surgery. This is a relatively high risk of a troubling and chronic side effect that has no cure, so some doctors are trying to avoid this more invasive treatment in favor of sentinel node biopsy. Patients who undergo sentinel node biopsy have a reduced risk of developing lymphedema, which MSKCC estimates at about 7 percent, but a 2011 review article in the International Journal of Radiation Oncology Biology Physics reports that “published incidence rates for [breast cancer-related lymphedema] vary substantially with a range of 2 to 65 percent based on surgical technique, axillary sampling method, radiation therapy fields treated and the use of chemotherapy.”

Skoracki explains that the lymph fluid that can build up and cause lymphedema is like “liquid mortar” that flows between the cells or “bricks” that make up our organs, bones, and other tissues. “This fluid is generated during the process of bringing nutrients to each one of the cells,” and it’s critical for exchanging oxygen, nutrients and waste from inside the cells.

He says this lymph fluid moves across the cell membrane and then through channels that route through the body. The problem is, these channels only flow in one direction, so if there’s a blockage or the fluid arrives at an area where a cluster of lymph nodes used to be but are now missing, it can get backed up and pool there. “If there’s a dysfunction either because of genetic reasons, underdeveloped lymph nodes or more commonly because of an insult to the lymph nodes from a dissection, radiation or chemotherapy… anything that’s downstream encounters a blockage where the intervention took place. The fluid continues to get produced and collected and moves up the extremities and hits a dead end. That’s where it starts to swell like a traffic jam.”

In most people, Skoracki says, there’s redundancy in the lymph system that enables it to continue functioning despite the loss of some lymph nodes, which is likely why patientswho have only one to three sentinel lymph nodes removed tend to have lower rates of lymphedema than patients who have all of the axillary lymph nodes removed during dissection or radical mastectomy. Even so, “in some people [the lymph system] gets overwhelmed or there’s not enough collateral channels,” so the fluid backs up and the area swells.

Although there’s currently no way to prevent lymphedema, there are ways to treat and manage the condition after it develops. Kate Howell, a doctor of physical therapy and certified lymphedema therapist with Peltz and Associates Physical Therapy in Santa Rosa, California, says that when lymphedema develops, it’s best to address it as soon as possible and stay vigilant for flare ups and other signs of worsening prognosis. The sooner you can address the issue, the better your chances are of reducing the severity of the condition.

“The standard of care is called complete decongestion therapy,” an intensive program of physical therapy that helps move pooled lymph fluid, Howell says. “This is initiated after someone has presented with lymphedema. We start with manual lymphatic drainage,” which Howell says is a specific type of “geographical massage that moves the lymph in the regions where there’s lymphatic vessels that can take it up and moves it to nodes that are not compromised.”

In addition to this hands-on approach that Howell says should only be executed by a certified lymphatic therapist, compressive bandages that look something like an ACE bandage but have compressive properties also help. These fitted garments apply pressure to the affected area to restrict how swollen it can get, but it’s a cumbersome, ongoing process to keep the swelling in check. “It’s really complicated. You have to come back to PT almost every day to get it rewrapped and you can’t shower with it, so it’s really a hassle. But the idea is that your limb has returned to normal or almost normal size and then you wear a garment for the rest of your life to keep that limb decongested to a size that’s palatable for you.”

These garments can be uncomfortable and expensive if your insurance company doesn’t cover them. Medicaid and, consequently, many other insurers do not cover lymphedema garments, which is why the Lymphedema Treatment Act has recently been introduced to Congress. If enacted, the bill will change Medicare law to cover the cost of lymphedema garments and set a precedent for other insurers to follow.

Beyond decongestion and compression, the National Lymphedema Network notes that exercise is an important aspect of treating lymphedema. The action of flexing and stretching the muscles during exercise helps move lymph fluid along. Skoracki says some newer surgical procedures are also helpful. These can involve creating a bypass channel to shunt fluid off or transplanting lymph nodes from other parts of the body. Skorecki says these procedures “are by no means a cure, but they usually help the majority of patients and they’ll reduce the volume [of fluid] significantly.”

Howell also says that whether you’ve experienced any symptoms of lymphedema or not, if you’ve had lymph nodes removed, you’re at risk for developing lymphedema. Therefore, it’s critical to avoid any kind of injury to the limb, as that can trigger additional swelling as the body tries to fight the damage or subsequent infection by sending more lymph fluid to the area. “You need to take extra good care of that limb. You don’t want manicures. You don’t want to garden without gloves. Technically, you shouldn’t even shave. Try not to get sunburned.” A small infection resulting from any of these sources can trigger swelling. “You can have survived cancer, had a mastectomy and dealt with all of that, and then you get a mosquito bite and the limb puffs up. So take really good care of it even if you don’t have symptoms,” she says. Howell also advises patients to regularly take and keep a log of measurements of the arm so you’ll be able to tell right away if something changes.