Reducing Risk of Lymphedema and Flare-Ups
Ideally, the best time to begin taking steps to reduce lymphedema risk is before breast cancer surgery. It’s also best to treat lymphedema in its earliest stages. But it doesn’t always work out that way.
You may already have had surgery or even finished breast cancer treatment before having heard anything about lymphedema. When people are first diagnosed, it’s natural to concentrate your efforts on treating the breast cancer — so it’s easy to lose focus on lymphedema.
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.
It’s important to know that sometimes you can still get lymphedema even if you follow every recommendation to reduce your risk.
“Part of what makes lymphedema so frustrating and complex is that one woman can have two lymph nodes removed and get it, while another can have 30 removed and never get it,” says Kathryn Schmitz, PhD, MPH, adjunct professor of epidemiology at the University of Pennsylvania. “Why? We don’t fully understand that yet.”
Research continues to see whether genetics might play a role in why some people develop lymphedema.
Reducing lymphedema risk before surgery
You can reduce your lymphedema risk to whatever extent you can, even if you can’t eliminate all risk. Here are some options you can discuss with your doctor to potentially reduce your risk.
If you are preparing for breast cancer surgery, it’s a good idea to ask your surgeon if you’re a candidate for sentinel lymph node biopsy (SLNB), which removes fewer lymph nodes than axillary lymph node dissection (ALND). Lymphedema risk is higher for those who have a greater number of underarm lymph nodes removed. If your surgeon is not experienced with SLNB, find one who is.
You also may want to ask what the next steps are if your surgeon finds cancer cells in the first one or two sentinel nodes. Research shows that ALND may not be necessary in certain people diagnosed with early-stage breast cancer with positive sentinel nodes. Other treatments such as radiation therapy, chemotherapy, and hormonal therapy may be enough to take care of the remaining cancer cells.
It’s important to remember that if the breast cancer has spread into multiple nodes, you may need an ALND to reduce the risk of recurrence or metastasis (when the breast cancer spreads to other parts of the body). Reducing that risk is more important than reducing the risk of lymphedema.
Axillary reverse mapping (ARM) is a technique that was developed to prevent breast cancer–related lymphedema. Surgeons inject the arm with a special dye that highlights the lymph nodes and vessels that drain lymph from the arm and hand. Surgeons can then identify and try to preserve those nodes and vessels as much as possible during SLNB or ALND.
ARM is still considered experimental and not widely available, but it has shown some promise in research studies. It makes sense to ask your surgeon about ARM, but it’s possible that the only way to have the procedure is by participating in a clinical trial.
Early swelling in the arm can be difficult to notice. Before breast cancer surgery, ask your cancer care team if they can measure the circumference (the distance around) of your hands and at various points along your arms from the wrist to the elbow to the upper arm. After you have surgery, your doctor, nurse, or physical therapist can measure the same points to keep track of any swelling.
You can always take your own measurements using a paper or plastic tape measure or even a flexible vinyl spring-loaded tape measure. (The stiff metal tape measure that homebuilders and remodelers use won’t give you an accurate measurement.) Measuring both sides is important so you can tell the difference between weight gain, which would increase the size of both arms, and true lymphedema, which would probably affect only one.
A lymphedema specialist is a healthcare professional who diagnoses, treats, and manages lymphedema after breast cancer surgery and treatment. Experts can include physical medicine doctors (also called physiatrists), nurses, physical therapists, occupational therapists, and massage therapists. During this initial appointment, the lymphedema specialist can:
measure the circumference (the distance around) of your arms and hands
determine how strong your arms and upper body are and note your current activity level; your lymphedema therapist can tailor a post-surgery exercise and rehabilitation program that is right for you
show you stretching and flexibility exercises that can increase your arm’s range of motion and prevent stiffness after surgery
explain the signs and symptoms of lymphedema and what you should do if you experience them
schedule follow-up visits for the months and even years after surgery
Nicole Stout, DPT, CLT-LANA, research assistant professor at the West Virginia University Cancer Institute, says she generally sees patients before surgery, 1 month after surgery, every 3 months for the first year, and then every 6 months for up to 5 years after surgery. At every visit, she stresses that patients should come back sooner if they notice any symptoms.
It’s important to remember that stretching and exercising your arms before surgery and in the weeks after can help reduce the risk of lymphedema.
“Learning the exercises and ways to reduce lymphedema risk before surgery is a good idea,” says Linda T. Miller, PT, DPT, CLT, a curriculum developer and an instructor at Recovery in Motion, Ltd. “That way you don’t have to learn them while you’re in pain or recovering.”
Your therapist can advise you on when it’s safe to start stretching and exercising after surgery.
Reducing risk of lymphedema and flare-ups after
After breast cancer surgery, you can ask to see a physical therapist before you’re discharged from the hospital — especially if you don’t already have a lymphedema specialist.
You may be encouraged to elevate the affected arm a few times a day for the first 24 to 48 hours after surgery. The physical therapist can show you how to prop up your arm on pillows correctly and some gentle stretching exercises you can do once it’s safe to get started.
Everyone is different, so be sure to speak with your lymphedema specialist. The specialist can advise you on when it’s safe for you to start:
stretching your arm to work the underarm area where the lymph nodes are concentrated
lifting your arm shoulder height or overhead
doing gentle exercises designed to restore full range of motion to the arm and shoulder to get the lymph flowing again, ease swelling, and increase flexibility
In the weeks, months, and even years after surgery, it’s important to be aware of how much stress you place on your hand, arm, and upper body.
“Now you have to pay attention to stresses you are putting on your arm, such as sudden changes in temperature, the amount you are lifting, cuts, sunburns — anything that would tax this area of the body,” says Dr. Schmitz. “Ask yourself, ‘What is my ‘arm stress-o-meter’ for the day?’ How many hours was my arm and hand in hot soapy water washing dishes? How many hours was I baking and cleaning? Lifting kids? Using harsh cleaners? Was I out in the hot sun that day?”
Here are a few guidelines that can help you minimize these types of stresses:
The skin is your body’s protective barrier against dirt and bacteria from the outside world. Any cuts or cracks in the skin can allow bacteria into the body. 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.
If you cut yourself or notice a crack or break in your skin, wash the area thoroughly with antibacterial or regular soap, apply a topical antibacterial ointment such as Neosporin or Polysporin (or a store-brand equivalent), cover it with a bandage or Band-Aid™, and watch for signs of infection such as redness, swelling, warmth in the area, or fever.
Talk to your doctor or lymphedema specialist about what to do if you notice possible signs of infection. Also keep in mind that even if you haven’t noticed any breaks in the skin, you can have early symptoms of infection, such as fever or fatigue.
You may need a prescription for antibiotics if you develop an infection. The infection should start clearing up within a few days of starting antibiotic treatment. But it’s important that you finish taking your antibiotic as prescribed. Your doctor may have you come in for a follow-up appointment to ensure the infection has cleared.
You may need to be admitted to the hospital if your infection doesn’t clear up so you can receive antibiotics intravenously — which means the medicine is delivered directly into your bloodstream through an IV or a port. Just be sure the IV isn’t inserted into the arm or hand on the side of your body that has the infection.
If you have persistent lymphedema and get frequent infections, you might need to take antibiotics whenever you get a cut or break the skin. Sometimes doctors prescribe a low-dose antibiotic regularly as a preventive measure — even if you don’t have an injury or related infection. Other times doctors may prescribe an antibiotic before any medical procedure that might let bacteria into your body, such as dental work. It’s also a good idea to talk to your doctor if you get frequent infections and are planning to go on a trip. You may need to take a prescription for antibiotics with you. Together you and your doctor can figure out what the best option is for you.
It’s important to note that a spreading rash that is warm and tender may be cellulitis — a serious bacterial infection of the skin and underlying tissue. Cellulitis requires immediate medical attention and treatment with antibiotics. Left untreated, cellulitis tends to spread rapidly and can even become life-threatening. If you can’t get in to see your doctor right away, go to the nearest emergency room for treatment.
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.
Try to avoid anything that causes your body’s tissues to produce much more lymph than usual or prevents lymph from flowing freely out of the hand and arm.
Soaking in hot tubs or taking very hot showers cause more blood to flow to the arm (the heat from these makes skin get red). Sudden intense exercise or lifting heavy things before your arm is ready for it can strain or pull the muscle and make your body’s tissues produce more lymph. Pressure from a heavy shoulder bag or too-tight clothing or jewelry also can restrict the flow of lymph out of the hand, arm, or chest.
Develop a gentle exercise plan with your lymphedema specialist to strengthen your arm and upper body over time. It’s very important not to do too much too soon with the affected arm.
However, research suggests that gentle exercise that slowly increases in intensity is not likely to lead to lymphedema for most people. In fact, some experts believe exercise can help condition your arm to handle tasks you did without thinking before, such as lifting children or carrying heavy grocery bags. Exercise also works your muscles and makes you breathe heavily, which encourages lymph to flow normally.
It’s important to work with an experienced lymphedema specialist who can tailor an upper body exercise program that’s right for you. And it’s wise to watch your arm closely to determine how much activity it can handle so you can make adjustments to your routine as needed.
People who are overweight or obese are at higher risk for developing lymphedema. If you are carrying excess weight, you can ask your doctor or lymphedema specialist to recommend safe exercises. You can also ask to see a nutritionist who can advise you on a healthy and balanced diet. Many hospitals and cancer centers have nutritionists on staff.
Early signs of lymphedema can be very subtle at first. Your arm, hand, or upper body may look or feel different. These changes can come and go at first which makes them seem like no big deal. As soon as you spot even minor signs and symptoms of lymphedema, it’s important to let your doctor or lymphedema specialist know.
If you’ve already been diagnosed with lymphedema, you can follow these same guidelines to help reduce your risk of symptom flare-ups. Remember that it’s never too late to start following these guidelines, and you may not necessarily develop lymphedema if you injure yourself.
“If at all possible, it’s worth seeing a physical medicine doctor or other expert who can show you how to use your body in the safest and fullest way again,” explains Marisa Weiss, MD, chief medical officer of Breastcancer.org. “Things that you did automatically before — carrying groceries, yoga, tennis — now need to be done with some caution and care until you know how your body will handle them again. You want to work with someone who knows how your body ‘moves and grooves’ and can help you gradually work back up to where you were before.”
Here are some additional steps you can take to help reduce lymphedema risk or keep lymphedema symptoms — such as visible swelling and discomfort — in check:
Use warm water for baths, showers, and cleaning.
Keep your hand and arm clean using gentle moisturizing soap such as Dove.
Moisturize daily to keep skin supple and prevent cracking. Try a gentle lotion such as Eucerin, Moisturel, or Aquaphor.
Use sunscreen with an SPF of 30 or higher to avoid sunburn (the more protection the better).
Wear protective gloves for activities that could stress your hand and arm or injure your skin. These include rubber gloves for cleaning or washing dishes; gardening gloves for planting, pruning, and outdoor chores; oven mitts for cooking and grilling; and even chef’s gloves when using sharp knives or a grater. Try to find gloves that extend up the arm.
Use a thimble when sewing.
Use insect repellents that won’t dry out the skin and don’t contain harsh chemical ingredients. Badger Anti-Bug Balm is a USDA-certified organic insect repellent.
Apply antibiotic ointment such as Bactroban, Neosporin, Polysporin, or the store brand equivalent to any insect bites, torn cuticles, or cuts.
Cover cuts with a Band-Aid, and report any signs of infection to your doctor or lymphedema specialist.
Push your nail cuticles back after you shower and keep them moisturized.
If you prefer to get your nails done at a salon, it’s a good idea to find out if there are reports of unsanitary practices or if clients have reported bacterial, fungal, or viral infections. It’s best to work with a manicurist who knows your health history and takes special care of your hands.
Use a cream hair remover labeled for sensitive skin instead of a traditional razor to shave your underarms. It’s a good idea to test any hair-removing creams on a small patch of skin first. If you prefer a razor, you may want to try an electric version as long as you still take care to avoid any skin irritation or nicks.
Take frequent breaks when you are doing heavy chores such as scrubbing, mopping, or raking, which involves repetitive use of the arm and upper body. Keep lymph flowing by doing the stretches your doctor or lymphedema specialist showed you during these breaks. Stop if your arm feels tired, heavy, or achy.
Stick to the exercise plan your doctor or lymphedema specialist recommended to you.
Follow your doctor’s or lymphedema specialist’s advice about lifting heavy things and don’t do too much too soon.
If you’ve decided to wear a breast prosthesis after mastectomy, get the lightest prosthesis you can find, so you don’t put too much pressure on your upper body.
Talk to your doctor if you have other health conditions such as diabetes, high blood pressure, congestive heart failure, or other cardiovascular conditions, which could affect lymphedema.
Talk to your doctor or lymphedema specialist about whether it makes sense for you to limit alcohol consumption. If you smoke, you may want to ask about smoking cessation programs.
Avoiding the following activities can help reduce lymphedema risk and keep flare-ups at bay:
Don’t use hot water for baths, showers, and cleaning.
Don’t immerse your arm and upper body in high-head hot tubs or steam baths. If you want to soak in a hot tub, keep your arm out of the water and limit your exposure to 15 minutes or less.
Don’t use harsh soaps or strong deodorant soaps.
Don’t use insect repellents that contain a significant amount of alcohol. Any ingredient that ends in “ol” is a type of alcohol.
Don’t get manicures that cut or overstress the skin around the nails. Artificial nails can also become infection sites if not fitted and maintained properly.
Don’t let doctors and nurses use your at-risk hand or arm to take your blood pressure, draw your blood, give you injections or vaccines, or insert an intravenous line. It’s important that you remind doctors and nurses at every appointment.
Don’t wear bras, camisoles, or tops that fit too tightly around your arms or chest, or clothing that has tight sleeves and restrains movement.
Don’t wear tight watches, bracelets, or rings on the affected hand and arm.
Don’t apply heating pads or hot compresses to the affected arm, neck, shoulder, or back. It’s also a good idea to avoid other heat-producing treatments provided by physical, occupational, or massage therapists, such as ultrasound, whirlpool, fluidotherapy (which combines high heat and massage), or deep tissue massage. Heat and vigorous massage bring extra fluid into that area of the body.
Don’t do any exercises — especially push-ups, the downward dog position in yoga, heavy weightlifting, or bowling — until your doctors or lymphedema specialist confirm you’re ready.
You may wish to consider getting a lymphedema medical alert bracelet. These bracelets are available for purchase through the National Lymphedema Network. You can also wear a G-sleeve — a flexible garment worn on the forearm and clearly labeled “no blood draws, no blood pressure, no IVs” — to doctor appointments or during hospital stays. If both your hands and arms are affected, you may want to ask if it’s possible to draw blood or take your blood pressure from another area of your body.
A compression sleeve is a stretchy garment that applies pressure on your arm and helps lymph flow.
Experts are divided on whether it makes sense for people to wear a compression sleeve during air travel. Research suggests that airplane flight itself is unlikely to trigger lymphedema in people who are considered low risk and haven’t had any symptoms. Still, if you’re planning to fly, it’s a good idea to let your lymphedema specialist know.
“Do we say that every woman who’s had lymph nodes removed needs to wear a sleeve? Absolutely not. But it’s worth considering each individual’s risk level,” explains Dr. Stout. “For instance, if I have a patient who had 30 lymph nodes removed and radiation to the chest wall and underarm, and she asks about wearing a sleeve for exercise or travel, my usual response would be ‘I’d rather that you have it than not have it.’ Or let’s say I have a patient with risk factors who is planning a bike trip through Europe. If the sleeve is light-grade and well-fit by an expert, there is no harm in having them wear it during activities that can put them at risk. We don’t know for sure yet if this will lower lymphedema risk, but theoretically it will help with fluid flow.”
— Last updated on June 2, 2022, 6:10 PM