July 2016 Ask the Expert: Lymphedema

July 1, 2016

Lymphedema is a condition in which extra lymph fluid builds up, causing swelling in tissues under the skin of the hand, arm, breast or torso. It is a common side effect of breast cancer treatment. Whether you are living with this condition or you've heard about it and are hoping to avoid it, you may have questions about lymphedema.

In July, Living Beyond Breast Cancer expert Lori B. Ranallo, RN, MSN, ARNP-BC, CBCN, answered your questions about lymphedema, including how to lower your risk of developing it, how to treat it and how to maintain your quality of life.

Remember: we cannot provide diagnoses, medical consultations or specific treatment recommendations. This service is designed for educational and informational purposes only. The information is general in nature. For specific healthcare questions or concerns, consult your healthcare provider because treatment varies with individual circumstances. The content is not intended in any way to substitute for professional counseling or medical advice.

Can breast reconstruction surgery make developing lymphedema more likely, or make symptoms of lymphedema worse?

There are many different types of reconstruction. We occasionally see swelling of the arm on the side where lymphinfo-icon nodes were removed when patients have tissueinfo-icon expanders and during the fill stages of the expanders. This is most likely due to added pressure on the lymphatics in the chest. This swelling generally resolves when the permanent implants are placed.

Autologous reconstruction such as TRAM (transverse rectus abdominis muscle), DIEP (deep inferior epigastric perforator), Latissimus flap or (SGAP) superior gluteal artery perforator surgeries in general do not increase the risk of lymphedemainfo-icon. The primary cause of lymphedema is removing axilliary lymph nodes. 

Will taking long flights make my lymphedema worse? Is there anything I can do while flying to prevent problems?

Travel by airplane is a controversial topic in the field of lymphedemainfo-icon preventioninfo-icon. There are a few isolated case reports of lymphedema developing in the arm on the side where lymphinfo-icon nodes were removed following air travel. But most research indicates the risk of developing lymphedema is directly influenced by:

  • the number of lymph nodes removed at the time of surgeryinfo-icon
  • whether the patient received radiation therapyinfo-icon
  • infectioninfo-icon in the arm on the side where lymph nodes were removed

I do recommend that patients who have had axillary lymph node dissectioninfo-icon (ALND) use a compression garmentinfo-icon during travel. 

What is a lymph node transplant and in what situations is it recommended?

Microvascular lymph nodeinfo-icon transfer (LNT) is the most promising surgical option for patients with lymphedemainfo-icon in the arm on the side where lymphinfo-icon nodes were removed. It appears to provide significant improvement, especially in early-stageinfo-icon lymphedema. According to limited research, about 50 percent of patients had improvement in the swelling. There are active studies to continue research on this technique, and there are surgeons across the country using this surgeryinfo-icon to decrease lymphedema. 

Does a person’s diet have any effect on preventing or treating lymphedema?

Research shows weight loss can help decrease the risk of lymphedemainfo-icon and improve the conditioninfo-icon in those diagnosed with lymphedema. There are recent studies that show eating a well-balanced diet, increasing exercise and decreasing your BMI (body mass indexinfo-icon) may decrease the risk of lympehdema.  You can find more nutritioninfo-icon information from the National Lymphedema Network.

Can I continue to do cardio and lift weights without raising my risk of lymphedema?

Exercise does not increase the risk of developing lymphedemainfo-icon. Increasing the heart rate and respiratory rates by cardio exercise helps circulate lymphatic fluidinfo-icon and may help reduce the risk of developing lymphedema. Lifting weights may also help build muscle tone and decrease the risk of lymphedema in some women. Make sure you check with your doctor for any restrictions. If your risk of lymphedema is high you may consider wearing a compression sleeve during strenuous activity. If the activities cause swelling or unusual pain – stop.

I’ve noticed the arm on the side I had surgery isn’t very flexible. Are exercises to increase flexibility OK, or should I avoid them in order to avoid lymphedema?

Good function and range of motion of the arm on the surgeryinfo-icon side is important for reducing the risk of lymphedemainfo-icon. Ask your doctor for specific exercises to improve strength and flexibility. 

I'm interested in continuing a yoga practice, but I'm scared of developing lymphedema. Are positions like downward dog and plank generally thought to be OK? Does it depend on how many lymph nodes were removed? (I’ve had all of mine removed from one arm.)

Certainly the risk of lymphedemainfo-icon is greater depending on how many lymphinfo-icon nodes have been removed. The risk is about 35 percent in women with a full axillary lymph node dissectioninfo-icon. Maintaining a healthy weight, staying active and avoiding infectioninfo-icon in the arm are all strategies for reducing your risk. Stretching exercises with yogainfo-icon are generally thought to be safe. Discuss further with your doctor and your yoga instructor. If specific movements cause pain or swelling then those activities should be avoided. 

I had breast and lymph node surgery about a month ago, and I’ve developed painful, uncomfortable cording. Does this mean lymphedema is setting in?

Axillary webbing or cording syndrome can happen after breast cancer surgeryinfo-icon. There is no direct correlation with this syndrome and lymphedemainfo-icon. A physical therapistinfo-icon or occupational therapist may be able to provide treatment to release the cording. 

I have very bad cording. My therapist has tried to break up the cords, but it’s not working. My shoulder feels frozen – I can only wear button-up or zip-up shirts. My doctor wants me to see an orthopedic surgeon. Is there anything else I should try? I’m feeling hopeless about it.

Frozen shoulder is a situation that may require help from an orthopedic surgeoninfo-icon. If you have tried more conservative physical therapyinfo-icon (PT) then a surgeon is probably the next step. It’s important to have full range of motion to avoid swelling due to lack of movement. 

I have had lymphedema in both my arms for years and every time I go for a blood test or get my blood pressure taken the nurses and techs always want to use my arms and hands, and they tell me it’s OK. I was always told never to allow anyone to stick a needle or put pressure on my arms or hands, is that still the case? I’ve been getting blood taken from my foot instead. Is there another way the blood pressure readings can be done?

Most clinicians agree that needle sticks and blood pressures should be avoided in arms affected with lymphedemainfo-icon. It may be possible to have blood pressure readings taken at the wrist, but check with your local lymphedema therapist who has worked with you in the past. 

I had a mastectomy with lymph node removal last year. I opted out of reconstruction and I'd really like to get a tattoo over my scar. I have mild lymphedema in my torso. Can I still get a tattoo?

In areas of the body where lymphedemainfo-icon exists, it is advised to avoid needle sticks, which includes tattoos. The No. 1 cause of lymphedema developing, or lymphedema getting worse, is an infectioninfo-icon. If you develop an infection at the site of the tattoo it could worsen your conditioninfo-icon

Is there any research on whether swimming is good or bad for preventing or treating lymphedema? Should I wear a compression garment in the water? Can I do exercises like water aerobics or lifting weights in the water?

Swimming is an excellent exercise to help with lymphedemainfo-icon preventioninfo-icon and treating existing lymphedema. Wearing a garment during swimming is not recommended. Water aerobics and lifting weights in the water have shown benefit. 

Can extreme heat or extreme cold increase the risk of lymphedema or make lymphedema worse?

Research has shown that extreme shifts in temperature can increase lymphedemainfo-icon. Often high humidity with heat can make the conditioninfo-icon worse. 

I had an axillary dissection on the right side in 2003 as part of breast cancer surgery. I do not have lymphedema. After a certain number of years, does the risk of developing lymphedema go down? Is it still recommended that I be careful with that arm (like avoiding using that arm for blood pressure readings, blood draws and IVs?)

The risk of lymphedemainfo-icon is a lifelong risk. It does not decrease over time. The risk is directly related to the number of lymphinfo-icon nodes removed during surgeryinfo-icon, and whether the area has become infected. With an axillary lymph node dissectioninfo-icon it is recommended to avoid needle sticks and repeated injury to the lymphatics (which may be caused by things like blood pressure cuffs). 

How do I know how much time each day I should spend wearing a compression garment?

Daily compression garments are generally recommended for 8 to 10 hours a day, depending on the stageinfo-icon of the lymphedemainfo-icon

I had lymph node transfer surgery and I feel that it’s greatly improved my quality of life. I was able to get the surgery even though my insurance didn’t cover it, but I know that many people wouldn’t be able to cover the cost themselves. What can we do to get insurance companies and programs like Medicare to cover lymphedema treatments?

Lymphedemainfo-icon is becoming more accepted as a chronicinfo-icon medical conditioninfo-icon that requires therapyinfo-icon. The more people who seek treatment and put pressure on their insurance companies to cover costs, the better things will be for all those dealing with this condition. Contact your state's insurance commissioner and tell your story – be an advocate!