Lymphedema is abnormal swelling that happens when too much lymph collects in any part of the body. Lymph is a thin, clear fluid that circulates through the lymphatic system to remove waste, bacteria, and other substances from the body’s tissues. Edema is the buildup of excess fluid.
Lymphedema can be a side effect of breast cancer surgery or radiation therapy. This usually develops in the arm or hand, but sometimes it can affect the breast, chest, underarm, trunk, or back.
If breast cancer spreads, it tends to move into the underarm lymph nodes because these nodes drain lymph from the breast. That’s why breast cancer surgeons often remove at least two or three lymph nodes from under the arm — called a sentinel lymph node biopsy (SLNB). When surgeons have to remove many or most of the underarm nodes, it’s called an axillary lymph node dissection (ALND).
These surgeries can cut off or damage some of the nodes and vessels that make up the pathways that lymph moves through. Over time, lymph can build up and overwhelm the remaining pathways, resulting in lymphedema — sometimes months or even years after breast cancer treatment ends.
Radiation treatments also can affect the lymphatic system. The risk of radiation-related lymphedema is highest in people who receive radiation directly to the underarm because it’s where most of the lymph nodes are located.
Because lymphedema tends to develop gradually, you may feel an unusual sensation — such as tingling or numbness — that comes and goes before you notice any visible swelling. But sometimes swelling can happen suddenly, without any warning signs.
Other common symptoms of lymphedema include achiness, fullness or heaviness, puffiness or swelling, and decreased flexibility or tightness in the affected areas.
Lymphedema also can lead to infections that spread through the body, so it’s important to tell your doctor if you experience any of these symptoms so you can get treatment as early as possible.
There’s no way to know for sure whether you might develop lymphedema after breast cancer treatment, but you can help yourself by:
knowing your risk factors
taking steps to reduce your risk
being aware of early symptoms
Left untreated, lymphedema can worsen and cause severe swelling and permanent changes to the tissues under the skin, such as thickening and scarring.
If you already have lymphedema but don’t remember hearing much about it during breast cancer treatment, you’re not alone, says Dr. Marisa Weiss, chief medical officer of Breastcancer.org.
“I can say from experience that the time right after diagnosis, when you are considering options and planning treatment, is a blur. When you are feeling so anxious and overwhelmed, it is hard to listen, understand, and decide. So even if lymphedema gets mentioned during this time, you may not remember it. Or it may not come up because the focus is really on getting you well. So if lymphedema does develop later on, it can feel like yet another insult to the body, one that many women weren’t fully prepared for. The good news is that women can learn how to manage it and lead normal lives.”
Lymphedema 101Apr. 30, 2021
How lymphedema happens
To understand how and why lymphedema happens, it can help to know about how the lymphatic system works.
The lymphatic system works with the cardiovascular system to maintain the balance of fluid in your body. Both systems supply the body’s tissues and organs with nutrients and also remove waste products.
The cardiovascular system kicks things off with the heart, which pumps oxygen- and protein-rich blood out through the arteries and into the body’s tissues and organs. The veins carry blood containing carbon dioxide and other waste products back to the heart.
About 90% of the blood gets sent back to the heart through the veins. But the remaining 10% is a fluid that leaks out into the body’s tissues through very tiny blood vessels called capillaries. This fluid — called lymph — contains protein, waste, cellular debris, bacteria, viruses, and excess fat that are all too big to get back into the veins.
At this point, the lymphatic system takes over. Tiny vessels called lymphatic capillaries have small holes that allow lymph to pass through. There is no heart-like pump for the lymphatic system. Instead, as you breathe and move your muscles, the lymph continuously gets pushed toward the heart from the outer parts of your body. It’s very much like how blood depleted of oxygen moves back toward your heart through the veins. First the lymph moves out of the lymphatic capillaries and into larger lymphatic collector vessels. These vessels have muscular walls and one-way valves that keep the lymph moving in the right direction. Many of the lymphatic vessels sit just under the surface of your skin.
As the lymph makes its way back toward the heart, it has to pass through the lymph nodes — small, round masses that filter out bacteria, waste, and other toxins and also contain infection-fighting white blood cells. The lymph nodes play a key role in recognizing and destroying these substances, while also signaling the body to launch an immune response when needed.
You have clusters of lymph nodes in your groin, under your arms, and in your neck, and additional nodes located along other lymphatic pathways in the chest, abdomen, and pelvis. As the lymph moves out of different areas of the body, it slows down to get filtered by the regional lymph nodes. For example, lymph from the hand, arm, and under the arm, and from the chest and upper back areas, drains to the axillary (or underarm) lymph nodes to be filtered.
Eventually the lymph travels to one of two large lymphatic ducts just below the neck, where it gets dumped into a large vein and back into the bloodstream. Now that the debris and proteins have been filtered out, it’s safe for the fluid to join the bloodstream again. Just as blood is always circulating throughout your body, lymph is continuously being moved out of your tissues, through the lymphatic vessels and nodes, and back to the lymphatic ducts.
Lymphedema happens when the lymphatic system becomes damaged or overwhelmed and can’t clear lymph fast enough, so the fluid builds up and causes swelling.
Sometimes, an injury or an infection can trigger lymphedema, especially if you have fewer lymph nodes as a result of breast cancer surgery.
When we injure ourselves or get an infection, the body’s tissues can get inflamed and make the lymphatic system work harder because blood flow and fluid load both increase. If your lymphatic system can’t keep up, it can trigger lymphedema.
Other times, overusing a limb can trigger lymphedema. For example, when you use your arm more than you’re used to, your heart is pumping more blood through your arm than usual. More blood means more fluid in the tissues, which also means more lymph that can overwhelm the lymphatic system.
Dr. Kathryn Schmitz, PhD, MPH, adjunct professor of epidemiology at the University of Pennsylvania, offers this analogy: “If you’ve ever lived at the bottom of a hill, you’ve seen what happens to the storm drain during a rainstorm. Sticks, leaves, and other debris come out of the trees and they all move toward the drain. All of this stuff is trying to get into the system and it gets stuck. The street starts to flood not just with plain old water, but with junk-filled, dirty water. That’s a good way to understand the beginning stage of lymphedema.”
Signs and symptoms of lymphedema
Symptoms of lymphedema after breast cancer treatment can include:
achiness, tingling, discomfort, or increased warmth in the arm, hand, breast, chest, or underarm
feelings of fullness or heaviness in the arm, hand, breast, chest, or underarm
tightness or decreased flexibility in nearby joints, such as the shoulder, hand, or wrist
bursting or shooting pain sensations, or pins and needles
tenderness in the elbow
slight puffiness or swelling in your arm, hand, breast, or chest with a temporary indentation of the skin when you press on it with your finger (this is called pitting edema)
veins or tendons in the hand that are harder to see, knuckles that look less pronounced, or once-wrinkled skin that looks younger or smoother
trouble fitting the arm into a jacket or shirt sleeve that fit well before
feeling that your bra is tighter, doesn’t fit the same way as before, or leaves an indentation on your skin
difficulty getting watches, rings, or bracelets on and off
noticing that the two sides of the back look different in size (asymmetrical)
changes in skin texture or appearance, such as tightness, redness, or hardening
rash, itching, redness, pain, or skin that feels warm
fever or flu-like symptoms
Detecting lymphedema early increases the likelihood of successful treatment. But early detection can be challenging because symptoms are often slight at first. For example, you may not notice if your arm’s circumference grows by 2 centimeters (about three quarters of an inch), but a change this small can suggest lymphedema is developing.
“There are four very important things women should know about lymphedema,” says cancer rehabilitation expert Dr. Nicole L. Stout, DPT, research assistant professor at the West Virginia University Cancer Institute. “It tends to have a gradual onset. It tends to develop slowly. It tends to progress over time. And at first, it tends to cause symptoms that appear for a time and then get better — which in itself can be misleading, making it seem like everything is OK when it’s really not.”
It’s also possible to feel a change in your arm or upper body before you actually see anything.
“Even before there is visible swelling, patients often report an unusual sensation — a sensory change,” says Dr. Stout. “They may feel tingling or numbing in their arm for a day or two, but it goes away. Then it happens again and goes away. And then a week goes by and they notice their rings don’t fit. That feeling is an important part of the story the body is telling: Something is changing; something is different. And it’s important for women to act on it. If we intervene early, we often can use conservative treatments and prevent lymphedema from becoming a persistent, limiting condition.”
After breast cancer surgery and radiation therapy, it’s normal for the area around the treatment site to get swollen. Called acute swelling, it lasts for some time and noticeably gets better as the body heals.
There is no set time limit on how long acute swelling lasts. Some doctors give it 3 months, but Dr. Stout says acute swelling should get better much sooner. “If [swelling is] persistent for more than 2 weeks after treatment, [it’s] a sign of lymphatic overload. The body is telling us a story: It can’t handle the fluid load, and if that fluid load persists, even in [a] small amount, it can ‘tip’ the body into lymphedema.”
Arm and hand lymphedema tend to be the most common after breast cancer surgery. This is because lymph from the arm and hand has to travel the farthest to get to the underarm lymph nodes — and it has to work harder against gravity to get there. The arm and hand also are more exposed to the stresses of the outside world, such as heat, strain, and cuts.
See your doctor if you experience any symptoms suggestive of lymphedema, even if they go away on their own. As Dr. Stout points out, “there is no such thing as a little bit of swelling.” Even without visible changes to the skin, symptoms such as fever, fatigue, or generally not feeling well could be a sign of infection and also should be checked out.
It’s never a good idea to wait and see if the symptoms get worse. The more time passes, the more likely it is that lymph builds up in the tissue and the harder it is to treat effectively.
If you ever experience sudden severe swelling — meaning that the affected area seems to blow up to a larger size within a day or two — see your doctor right away. It could mean that you have an infection, a blood clot (also known as deep vein thrombosis), or a recurrence of the cancer that is affecting the lymphatic system.
It’s important to know that sometimes doctors or physical therapists who aren’t experienced with lymphedema may downplay symptoms — especially if they seem fairly minor. But you know your own body best. It’s a good idea to find someone who has experience treating lymphedema so you can feel confident about getting an accurate diagnosis.
Risk factors for lymphedema
There are a number of risk factors for lymphedema — some that you can control and others that you can’t. Knowing what the risk factors are can help guide conversations with your doctor, nurse, or therapist who specializes in breast cancer recovery and lymphedema management.
People who have axillary lymph node dissection (ALND) are at high risk for lymphedema because that surgery removes many or most of the lymph nodes under the arm — typically anywhere from five to 30. The risk is lower for people who have sentinel lymph node biopsy (SLNB), which typically removes just two or three lymph nodes from under the arm.
According to the National Cancer Institute, between 5% and 17% of women who have SLNB develop lymphedema. The percentage among women who have ALND jumps to between 20% and 53%, and risk increases with the number of lymph nodes removed. It’s a good idea to ask your surgeon how many lymph nodes you had removed, regardless of which surgery you had, because it varies from person to person.
Having many or most of your lymph nodes removed also increases the risk of complications such as infection and seromas. A seroma is the buildup of clear bodily fluids in any area affected by surgery, such as the chest or underarm. Some seromas get better on their own, whereas others need to be drained using a needle. A 2011 study found that women with seromas requiring treatment had a higher risk of developing lymphedema.
An extensive surgical procedure, such as mastectomy, increases the risk for lymphedema more than a lumpectomy. Experts also believe that having multiple chest surgeries — either to treat breast cancer or another condition — can disrupt the lymphatic system and increase the risk for lymphedema.
It is unclear whether breast reconstruction can increase lymphedema risk. Some doctors have found that people who have breast reconstruction are not at any greater risk for lymphedema than those who do not.
Still, Dr. Stout recommends that people who have breast reconstruction should be monitored by an experienced lymphedema therapist. “I would never deter a woman from having reconstruction because of concerns about lymphedema risk. But any time there is an inflammatory response, as there is with surgery, there is a risk of fluid load that leads to lymphedema. I follow my patients closely as they go through reconstruction, and if I see any problems developing, I can start some compression or bandaging.”
Radiation treatments can affect the lymphatic system. Scar tissue resulting from radiation therapy may press on or narrow the lymph vessels and nodes that remain after breast cancer surgery. This damage interferes with the flow of lymph out of the arm and upper body.
People who receive radiation therapy directly to the underarm tend to have the highest risk of radiation-related lymphedema because it’s where most of the lymph nodes are located. But radiation therapy to the breast or chest area also increases lymphedema risk.
Chemotherapy can lead to weight gain, which can increase the risk for lymphedema.
Many people who have chemotherapy also take steroids, such as dexamethasone (brand name: Decadron), which can also contribute to weight gain.
Chemotherapy also can lead to weight gain as a result of hormonal changes, such as temporary or permanent menopause, or fatigue that makes it hard to stay active.
The needle used to place an IV for intravenous chemotherapy may also increase lymphedema risk if given in the arm on the same side of your body where you had lymph nodes removed. If intravenous chemotherapy is part of your breast cancer treatment plan, and your surgeon removed lymph nodes from the area under one arm, talk to your doctor about having the IV placed in the opposite arm for chemotherapy infusions to lower your lymphedema risk. If your surgeon removed lymph nodes from both sides, you may want to ask your oncologist about using a chest port.
People who are overweight or obese are more likely to develop lymphedema after breast cancer treatment.
Doctors consider people with a body mass index (BMI) of 25 to 29.9 to be overweight, and people with a BMI of 30 or greater to be obese. For example, a woman who is 5'5" and weighs 150 pounds is considered overweight. A woman who is 5'5" and weighs 180 pounds or more is considered obese. There are online tools you can use to calculate your BMI, such as this one from the National Institutes of Health.
When your body has extra fat, that fat tissue needs more blood vessels to bring it oxygen and nutrients. As a result, any areas of the body with extra fat also have more fluid to get rid of, which can overwhelm your lymphatic system and lead to lymphedema.
When we injure ourselves or get an infection, the body’s tissues can get inflamed and make the lymphatic system work harder because blood flow and fluid load both increase. If your lymphatic system can’t keep up, it can trigger lymphedema.
You may injure yourself from suddenly lifting something too heavy, such as a bag of groceries, gallon of milk, or small child. A trainer or therapist specializing in lymphedema can help you strengthen your arm gradually, so it can handle lifting heavier loads after surgery.
Infection can happen right after you have surgery or later on from an infected cut, bug bite, needle stick, or cracking of the skin. Infection is a special concern after you’ve had any lymph nodes removed — whether or not you’ve ever had any symptoms of lymphedema. For many people, infection is the trigger for their first episode of lymphedema.
Even a small cut that gets infected with bacteria can lead to lymphedema. Bacteria that multiply in lymph can stop the fluid from circulating and it can pool in the tissue.
If you notice a cut or break in the skin, it’s a good idea to:
wash the area with soap and water
apply an over-the-counter antibiotic ointment, such as Neosporin, Polysporin, Bactroban, or a store-brand equivalent
cover the area with a clean, dry bandage and change it regularly, keeping it clean and covered until it heals
check every day for signs of infection, such as redness, swelling, increased heat, or tenderness in the area, or chills, fever, or fatigue (you may feel flu-like symptoms before you notice any changes in the skin)
It’s important to see your doctor right away if you think you have an infection. People who’ve had infections should let their lymphedema therapists know so they can monitor for any signs of lymphedema or for symptom flare-ups.
There are differing opinions about whether or not airplane travel increases lymphedema risk. Air pressure is lower at high altitudes. Even though airplane cabins are pressurized for our comfort and safety, the pressure is still lower than it is on the ground. The theory is that less pressure on the upper body and limbs could slow down the flow of lymph, leading to an increased risk of pooling in the tissues, especially during long flights. Another possible factor is the many changes in pressure that people experience when they have two or three connecting flights.
Research suggests that airplane flight itself is unlikely to trigger lymphedema in people who are considered low risk and haven’t had any symptoms. But if you’re planning to travel by plane, it makes sense to let your lymphedema therapist know.
Also, beware of other travel-related risk factors. Lifting very heavy suitcases can cause an injury that leads to lymphedema. Keeping your arm and upper body in one position for too long can slow down the outflow of lymph and also lead to lymphedema.
“In the treatment community, we’re talking more about the importance of developing a risk profile for every patient,” says Dr. Stout. “We must identify women at high risk and monitor them a little more closely for signs and symptoms and complications of lymphedema. But we also have to realize there will always be those ‘outliers’ who appear to be low risk but still develop lymphedema.”
It’s important to remember that even if you are considered to have low risk for lymphedema, it doesn’t mean you have zero risk. It’s still a good idea to take precautions for avoiding lymphedema and get help quickly if you notice any signs or symptoms.
Reducing risk of lymphedema and flare-ups
Ideally, the best time to begin taking steps to reduce lymphedema risk is before breast cancer surgery. But it doesn’t always work out that way.
The good news is that even if you don’t learn about lymphedema early on, there are still steps you can take to reduce your risk. And even if you’ve already been diagnosed with lymphedema, there are steps you can take to prevent it from getting worse.
Learn more about reducing lymphedema and flare-up risks.
Finding a lymphedema specialist
Lymphedema specialists are healthcare professionals with expertise in diagnosing, treating, and helping to manage lymphedema. Experts can include:
physical medicine doctors (also called physiatrists)
If you have or will have breast cancer treatment that puts you at risk for developing lymphedema, or you’ve developed symptoms, talk to your doctor about finding an experienced lymphedema specialist.
As you begin your search, it’s ideal to find someone with experience who also is a certified lymphedema therapist (CLT). Still, it’s important to know that there isn’t a single agreed-upon set of standards for certification. For example, there are trained professionals who are very good at treating breast cancer–related lymphedema who are not CLTs.
The best way to find a lymphedema specialist is to ask your doctor, cancer center, or hospital-based cancer program to recommend a provider who specializes in breast cancer–related lymphedema. You can also find a lymphedema specialist by using the online directories provided by the National Lymphedema
Network (NLN) and the Lymphology Association of North America (LANA).
Here are some questions to help you as you narrow your search for a lymphedema specialist:
Are you a physical medicine doctor, nurse, physical or occupational therapist, massage therapist, or other rehabilitation therapist? How long have you been practicing?
Have you received specific training in all the elements of complete decongestive therapy, including manual lymphatic drainage, bandaging, and compression?
When and where did you complete your training in lymphedema management and treatment?
Do you participate in continuing professional education on lymphedema?
How much of your practice focuses on managing lymphedema after breast cancer treatment? How many people with breast cancer do you see in a typical week?
Are you experienced in fitting people for compression sleeves and garments, or can you refer me to a fitter with your medical supply company?
Which types of health insurance do you accept?
Would you feel comfortable with letting me speak to a couple of your current patients?
If you live in a remote area, it may be more challenging to find a lymphedema specialist close to home. Try to find someone within driving distance who can provide an initial consultation and some follow-up care.
Lymphedema evaluation: What to expect at your appointment
The lymphedema specialist conducts a thorough evaluation to figure out if you have lymphedema and whether it’s mild, moderate, or severe. At your first appointment, it’s important to answer all the lymphedema specialist’s questions so you can both decide on the best treatment options for you.
Let the lymphedema specialist know your complete medical history and breast cancer history. Share specific details regardless of how long ago you were diagnosed, including the type and location of the breast cancer, the number of lymph nodes removed, the type of surgery you had, and any additional treatments you had, such as radiation therapy or chemotherapy. If possible, take your medical records with you.
Tell the specialist about any symptoms you’ve noticed, such as heaviness, tingling, or swelling. It also makes sense to tell your therapist if you notice symptoms when you exercise or when it’s very hot outside. These activities can cause an increase in lymph production. Andrea Cheville, MD, a physiatrist at Mayo Clinic, recommends keeping a diary of symptoms to share with the specialist.
Let the specialist know of any pain you feel in the affected area, what the pain feels like and how intense it is, and how long the pain lasts. “Sometimes if there is inflammation in the arm, [it] causes more production of lymph, and if we can solve that then we can solve the problem,” says Dr. Cheville.
Tell the specialist whether you exercise, what your diet is like, and how much you weigh. Dr. Cheville explains: “This is about getting a sense for the person: Is she active? Does she exercise? Is she overweight? Does she have many other risk factors for lymphedema that are not related to her breast cancer treatment? And do these put her at much higher risk for lymphedema and, even beyond that, for bad lymphedema?”
The lymphedema specialist then examines you for any changes in the skin and soft tissue of the affected area. This often involves a manual examination (called palpation) to feel for any signs of fibrosis — or scarring of the soft tissue under the skin.
The specialist also measures the circumference of (the distance around) your hand, wrist, forearm, and upper arm. It’s important to take these measurements along the same spots at regular intervals so the specialist can compare over time and see if there are any changes. The specialist can also compare these measurements with either baseline measurements taken before surgery or with measurements taken from the unaffected arm.
The most common way to test for lymphedema is to take these circumferential measurements. But it’s important to know that measurements can’t be use to assess lymphedema of the chest, breast, or trunk. Instead, the specialist performs a physical exam and considers the symptoms you’ve experienced.
If you have sudden severe swelling, the lymphedema specialist needs to rule out other possible causes of your symptoms. In cases like these, specialists use an MRI, a CT scan, or an ultrasound to check for a possible recurrence of the breast cancer, deep vein thrombosis (blood clot), or infection.
Typically, specialists can [diagnose lymphedema] by using the measurements they take and the list of reported symptoms. But sometimes, specialists need to run additional tests before they can make a diagnosis. These tests can also help specialists monitor lymphedema’s response to treatment. Tests may include the following:
Optoelectronic limb volumeter: Also called infrared perometry, this technique uses an infrared optical electronic scanner to calculate the volume of both arms for comparison. You place each arm into a large frame that sends infrared light beams inward from different angles. A computer uses the resulting information to calculate arm volume so the specialist can compare the two.
Bioimpedance scanning (BIS): Instead of measuring the arm volume, bioimpedance scanning detects the amount of fluid in the arms. The scanning device passes a small, painless electrical current through the arms and measures resistance to the current. The device measures up and down both arms. The higher the fluid content in the spaces between the tissues (also known as interstitial fluid), the lower the resistance.
Imaging studies: MRI and CT scans can help specialists evaluate soft tissue for lymphedema-related changes. In some cases, specialists might order a lymphoscintigraphy. Specialists inject small amounts of radioactive material into the hand or forearm, where it gets taken up by the lymphatic system. This nuclear medicine imaging technique generates pictures that let the specialist check for any blockages that might be driving lymphedema.
There are two older tests that you might encounter if you participate in a research study on lymphedema.
The water displacement test requires you to place each arm into a large cylinder of water. The researchers measure any water that is pushed out to see if one arm displaced more water than the other.
In tonometry, a tonometer is pressed into the skin to measure the amount of force required to leave an indentation in the tissue. The results can help determine the degree of firmness or fibrosis (tissue scarring) under the skin. The original tonometers were mechanical devices with dial faces, but these are no longer in production. Newer electronic tonometers give digital readings and are still being tested for accuracy and ease of use in clinical trials.
The criteria for diagnosing lymphedema can vary by specialist. For example, some specialists consider an increase of 2 centimeters (cm) in the circumference of the affected hand and arm to be a sign of early lymphedema. Other specialists consider a volume difference of 200 milliliters between the affected arm and opposite arm to be a sign of early lymphedema.
But when making a diagnosis, lymphedema specialists should look not only at size and volume measurements, but also at the appearance of the affected area.
“There may be no size or volume changes in the arm, but you could have subtle hand swelling or pitting on the arm,” explains Dr. Cheville. “So it’s important not to be too locked into arm measurements alone, as that can create a false sense of security. You also need to be watching the arm and looking for the loss of what we call ‘anatomic architecture’ — an inability to see the veins and tendons in the arm as clearly, or less pronounced knuckles, or skin that is less wrinkled and therefore looks younger.”
Dr. Cheville served on an expert panel that came up with guidelines for defining lymphedema for the National Cancer Institute (NCI). Researchers supported by the NCI use these
guidelines as their basis for diagnosing lymphedema. The system assigns a grade for lymphedema and lymphedema-related fibrosis (thickening or scarring of tissue). The grade is based not only on measurements but also changes in appearance.
Still, this grading system is used primarily in clinical studies. Your lymphedema specialist is more likely to use the following stages from the International Society of Lymphology to diagnose lymphedema:
Stage 0 (also called latent or subclinical): There is no visible edema (swelling) or pitting (temporary indentation of skin when pressed). But you may notice a mild tingling or slight heaviness or tightness. You can have stage 0 lymphedema for months or years before obvious symptoms develop.
Stage 1 (early or mild lymphedema): There is visible swelling as lymph starts to accumulate. Although a temporary pit (or small dent) forms when you press the skin, there is no permanent damage to the skin or underlying tissues. So if your arm is swollen, it can go back to normal if you elevate it. Specialists consider this early stage lymphedema to be reversible.
Stage 2 (moderate lymphedema): There is visible swelling, usually with pitting. Elevating the affected area does not help. This means there is inflammation, hardening, or thickening of the tissue under the skin. As scarring of soft tissue under the skin worsens, pitting may disappear. Your specialist can help you manage stage 2 lymphedema with treatment, but tissue damage is not reversible.
Stage 3 (severe lymphedema): This is the most advanced stage, but it is relatively rare in people diagnosed with breast cancer. There is visible swelling, and the affected area enlarges and becomes misshapen. The skin hardens and thickens so much there is no pitting, and lymph can leak through damaged tissue.
Once you have mild lymphedema, your risk for developing moderate lymphedema is higher than someone who has never had any symptoms — even if your symptoms go away with treatment.
“There are side effects of breast cancer treatment that are private and not visible to the outside world. Then there are others that are public and visible, such as hair loss from chemotherapy and body changes from surgery — and lymphedema falls into this category,” explains Dr. Weiss. “But unlike those other side effects, lymphedema is often unexpected. So it can feel like adding insult to injury when it occurs, especially if women haven’t been told very much about it.”
It’s important to note that lymphedema is different from axillary web syndrome (or cording).
Although lymphedema and axillary web syndrome are both linked to the removal of lymph nodes, they result from two different processes:
lymphedema from the backup of fluid into soft tissue
axillary web syndrome from the scarring (or inflammation) of lymph or blood vessels in the underarm area
Some experts believe that cording may increase the risk for lymphedema to develop later on, but more research is needed.
Creating your lymphedema treatment plan
There are various treatment options for lymphedema, and each option depends on a number of factors specific to your situation. It’s a good idea to speak with your lymphedema specialist so you can create a plan that makes sense for you.
Here are some of the factors that may influence your treatment plan:
Mild lymphedema that causes minor swelling typically requires less treatment than later-stage lymphedema that causes obvious swelling and fibrosis (scarring of the soft tissue).
It’s important to know that treatments can help ease even swelling caused by later stage lymphedema. And it’s just as important to understand that even minor lymphedema needs attention.
Once you develop even mild lymphedema, any situation that increases your body’s production of lymph can help trigger symptoms.
Triggers vary from person to person. For example, some people experience lymphedema flare-ups when it’s hot outside, whereas others experience flare-ups when they use their arms more than usual.
Additional lymphedema triggers can include sunburn, carrying excessive loads, standing for long periods of time, limb constriction because of tight clothing or jewelry, skin infections, insect bites, injections, and wounds or injuries to the affected limb.
Health insurance plans do not always cover lymphedema treatments. It’s a good idea to find out exactly what your particular plan covers.
For example, a health plan might cover a certain number of visits with a lymphedema specialist, but not a compression sleeve. If cost is a concern, talk with your medical team. They may be able to offer helpful advice and suggestions.
Some treatment plans may involve daily appointments with your lymphedema specialist for at least a few weeks. An aggressive approach to treatment at the start can make a major difference in the long run. But it can be challenging for some people to commit to so many appointments, whether it’s because of home or job responsibilities or lack of reliable transportation.
If traveling to so many appointments is difficult for you, it’s best to let your lymphedema specialist know so you can come up with a schedule that is more realistic and practical for you.
“There is a lot of road between doing nothing and the full standard of care. Something is better than nothing in every case, and a plan can always be adapted to meet an individual patient’s needs,” says Dr. Stout.
Exercise can often be an important part of a lymphedema treatment plan. At first, your lymphedema specialist may have you do gentle stretching and range-of-motion exercises that help your muscles contract and relax. These stretches and exercises can help the lymphatic system flow more effectively.
“Some examples could include making a fist and extending the fingers; doing wrist curls; or gentle punching motions to extend and flex the elbow,” says Dr. Cheville.
If you weren’t physically active before being diagnosed with lymphedema or have any mobility issues, let your lymphedema specialist know to ensure your treatment plan is safe for you.
When creating a treatment plan with your lymphedema specialist, it’s important to consider your expectations.
Some people need treatment on and off for the rest of their lives, whereas others only need treatment for a few weeks. Some people choose an aggressive approach, whereas others prefer a modified approach that takes their usual daily routine into account.
Additionally, once you start your treatment plan, it’s OK to change your mind and adapt the plan to better suit your needs. For example, you may decide that you’d rather not wear a compression sleeve while you sleep.
Treatments for lymphedema
There are various surgical and non-surgical treatments for lymphedema to consider. It makes sense to review as many as you can with your lymphedema specialist so you can decide which of them may work best for you.
Breast reconstruction and other surgeries after a lymphedema diagnosis
It’s a good idea to speak with a lymphedema specialist if you’re planning on having breast reconstruction surgery — or any other type of surgical procedure — after you have been diagnosed with lymphedema.
Even if you plan on having surgery on the side opposite to where you are experiencing lymphedema symptoms, it’s normal to be concerned that the surgery could trigger lymphedema on that side as well.
Your lymphedema specialist can help you prepare for surgery and advise on which questions to ask your surgeon before the procedure. Your specialist can also monitor you to see if the surgery triggers any lymphedema symptoms, and advise on whether it makes sense for you to have manual lymphatic drainage, bandage the affected area, or wear compression garments — all in an effort to keep excess lymph and fluid from building up in the area again.
Before the procedure, it’s important to let your surgeon know that you are receiving treatment for lymphedema. It’s a good idea to ask the surgeon if there is a way to avoid or minimize any further damage to your lymphatic system.
It’s not clear whether breast reconstruction surgery increases the risk of lymphedema or lymphedema flare-ups. It’s also not clear whether breast reconstruction surgery can worsen lymphedema symptoms in people who have already been diagnosed. But we do know that surgery can cause inflammation that brings more fluid to the affected area, which can increase the risk of lymphedema flare-ups. This is why it’s important to ensure that your lymphedema specialist is part of the surgery process, so you can adjust your lymphedema plan as needed.
Lymphedema and your job
When you return to work after breast cancer surgery and treatment, it’s important to protect yourself from injuries or exposure to harsh substances. Chefs, gardeners, doctors or surgeons, chemists, researchers, and florists, for example, should wear protective gloves.
It’s also important to take precautions if your job requires heavy use of your arm, hand, or upper body — including repetitive or intense lifting, reaching, pushing, or pulling. Daycare teachers, nurse’s aides, cleaners, mail or package delivery people, assembly line workers, construction workers, and waitresses may have an increased risk of lymphedema and lymphedema flare-ups because they actively use their limbs all day.
One key way to prepare yourself to return to work safely is by working with your lymphedema specialist to strengthen the affected area gradually and condition yourself for work-related tasks. It’s never a good idea to jump right back in to heavy arm and upper body use too soon after surgery. Everybody is different, but it can take anywhere from six weeks to two months to get back in condition, says Dr. Stout.
It’s a good idea to give your employer a note from your doctor or lymphedema specialist and explain that:
you have been diagnosed with lymphedema
lymphedema can be a complication of breast cancer treatment
you may need a temporary change in role while you build up strength in the affected area
You may also be eligible to take leave while you recover, whether because your employer offers short-term disability insurance or under the Family Medical Leave Act.
If your lymphedema specialist recommends you wear a compression sleeve or garment as a precaution, your co-workers may be curious and ask you about it. It may make sense to figure out how much you feel comfortable sharing in response to their questions.
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— Last updated on February 4, 2022, 5:27 PM