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July 2013 Ask the Expert: Understanding Lymphedema

Lymphedema is an important side effect to know about as you go through breast cancer treatment. During the month of July, Living Beyond Breast Cancer experts Joy Cohn, PT, CLT-LANA, and Stephanie Duczak, PT, CLT-LANA, answered your questions about what lymphedema is, what causes it, ways to reduce risk, and what treatment and management options are available.

What causes lymphedema to flare up? All of a sudden the swelling returned, especially in my hand.

What are your specific strategies for long-term lymphedema management both for patients and physical therapists with respect to wrapping versus sleeves, pumps, massages, etc. and why?

Since my surgery was over 3 months ago, should I still be swelling?  Should I consider going to a lymphedema specialist? 

What are the best exercises? Anything to avoid in terms of physical activity?

Is full-body lymphedema a real diagnosis? What is the best way to address it?

If you have had lymphedema at one point but no longer have swelling, is it necessary to keep wearing the sleeve other than for exercise and flying?

I find wearing my lymphedema glove and sleeve uncomfortable. Are there any other options to help keep the swelling down?

I had breast cancer twice, in 1980 and 1992. I did not develop lymphedema until 2012.  Is this unusual?

I have not had lymphedema much at all, but I am terrified to travel by airplane as I have heard that flying can bring it on. Would wearing a sleeve help? Would one use a gauntlet as well? Any other suggestions?

Do you know why medical supply places require a prescription to buy a sleeve — or does that vary by state perhaps? Can I buy one online without a prescription?   

Is lymphatic drainage massage encouraged or discouraged? What about dry brushing? 

Would you address the number of axillary lymph nodes removed and risk of lymphedema?

I had chemo, bilateral mastectomy, [removal of] lymph nodes (4) and radiation in 2011 – 2012. I have left-side armpit and trunk swelling, will this ever go away? 

Where online can I go to get proper exercise information for making me better and more comfortable? 

I only had 2 nodes removed during my sentinel node biopsy. Am I really at risk of lymphedema? How high is my risk?

Is it safe to use my arm for things like using a hammer, pulling weeds, or working out with weights while I have a sleeve on?  

Question: What causes lymphedema to flare up? I was doing pretty well with the swelling in my hand and arm for over a year. All of a sudden the swelling returned, especially in my hand.

Ms. Cohn: Any event that leads to additional blood flow into the area at risk may be the inciting event for swelling to occur: excess heat, excess activity when the limb is not used to it, infection (cellulitis) and trauma are common inciting events. Sometimes we can’t identify a specific event, but the very slow accumulation of excess fluid and protein finally exceeds the tissue's capacity to hold the fluid.

We speak about lymphedema having stages; one is called ‘latency’ because in this case there is additional fluid already in the tissues, but we don’t see actual swelling because the tissues can have up to 30–40 percent extra fluid saturating them before actual swelling is seen. In this stage a person may feel heaviness, achiness or unusual sensations. If these symptoms are in your limb and they last for a week or more, it might be a good idea to see your doctor or a therapist who specializes in lymphedema treatment. Many women have these kind of sensations intermittently for many years before a swelling is actually apparent.

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Question: What are your specific strategies for long-term lymphedema management both for patients and physical therapists with respect to wrapping versus sleeves, pumps, massages, etc. and why? Please include any others not listed above.

Ms. Cohn: It is my belief that CONSISTENCY is the key to successfully managing lymphedema. Well-fitting daytime compression garments are key because they are used when you are active with more blood flow in the tissues. In addition, the arm is ‘hanging down,’ encouraging blood to pool in the limb. A compression garment reduces the leakage of fluid from the blood vessels AND enhances the pumping action of the muscles, removing more fluid from the limb throughout the day. Compression bandaging is considered the ‘gold standard’ for managing swelling, but many women choose to use bandage alternatives at night: custom or adjustable low-stretch garments that support the tissue while sleeping. 

Why should compression be used both day and night? It is because the tissue fluid that must be managed is produced by our blood flow and our blood is flowing both day and night! Self manual lymphatic drainage (MLD) is practiced by some women, but it is difficult to be as effective as a therapist is with this technique.

Some women seek out practitioners for regular MLD as a maintenance treatment. Unfortunately, it is almost never covered by medical insurance and in any case, it does not take the place of daily self care: compression and meticulous skin care. An analogy would be that we get our teeth professionally cleaned twice a year, but that can’t substitute for brushing daily twice a day.

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Question: Since my surgery was over 3 months ago, should I still be having so much swelling?  Should I consider going to a lymphedema specialist? 

Ms. Cohn: Yes, it is normal to see some degree of postoperative swelling and many women also will experience some fluctuation in swelling during their adjuvant treatment.However, 3 months of swelling should be evaluated by your doctor and a lymphedema therapist because lymphedema is always easier to treat when it is addressed early on. Many women are unaware that lymphedema can also occur in the breast on the side of the cancer and is also treated very successfully using the same type of treatment used to treat arm lymphedema.

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Question: What are the best exercises? Anything to avoid in terms of physical activity?

Ms. Cohn: Women do all of the usual kinds of exercise after treatment for breast cancer! However, recent research has given us some good guidelines regarding how to return to (or start!) an exercise program.

The PAL trial was a research study conducted in Philadelphia, Pa., which had women do regular weight lifting after being treated for breast cancer. There were women both WITH lymphedema and AT RISK for lymphedema in this study. They were able to safely exercise following a program that included a warm up of light aerobic exercise, flexibility exercises, core strengthening exercises, weight lifting and then flexibility, and cool down exercises again. The mantra of this program was: START LOW and PROGRESS SLOW.

Both the AMA (American Medical Association) and the ACSM (American College of Sports Medicine) strongly recommend exercise for cancer patients at any stage during their journey.  They state that ‘Exerciseis Medicine’ and research is providing stronger evidence all the time that it can help with cancer fatigue, reduce the tendency towards weight gain after breast cancer treatment and reduce the risk of a recurrence of cancer. Seek out an evaluation by your MD and a physical therapist if you have musculoskeletal problems or have never exercised so that you can learn how to exercise correctly! 

In terms of avoiding exercise? It is recommended that people at risk for lymphedema should avoid hot yoga (Bikram) because it will potentially cause an increased tendency to edema.

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Question: Is full-body lymphedema a real diagnosis? What is the best way to address it?

Ms. Cohn: What you describe is very rare. Often swelling throughout the body is an indication of a systemic condition, which should be evaluated by a physician. Please consider a medical workup to rule out cardiac, renal or other medical conditions that are more likely as causes of what you describe.

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Question: There seems to be some controversy concerned with wearing a compression sleeve. If you have had lymphedema at one point but no longer have swelling, is it necessary to keep wearing the sleeve other than for exercise and flying?

Ms. Cohn: If you have never had lymphedema, there is no evidence to suggest that it is necessary to wear one in ANY situation. If you have experienced swelling before, it is considered prudent to wear one when flying or doing heavy exercise. HOWEVER, if you wear a sleeve for exercise or flying WEAR A GLOVE OR GAUNTLET to prevent swelling in your hand. In the 17 years that I have treated lymphedema - the women I saw who developed swelling on a plane were wearing a sleeve and no handpiece and their hand swelled up! Wearing a sleeve, alone, on a plane is like putting a tourniquet on your arm.

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Question: I find wearing my lymphedema glove and sleeve uncomfortable. Are there any other options to help keep the swelling down?

Ms. Cohn: For daytime, a sleeve and glove are probably the best choice. There are many different styles of garments and fabrics that may be appropriate for you and would be more comfortable to wear. Have you had treatment to reduce the congestion in your arm before you obtained the garments you wear? Garments are usually not comfortable if worn on an arm that is congested. Also, do you wear compression garments at night?  Bandaging or a bandage alternative at night may help to make your daytime compression garments feel more comfortable, when your arm is less swollen when you put them on in the morning.

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Question: I had breast cancer twice, in 1980 and 1992 (a new primary the second time). I did not develop lymphedema until 2012.  Is this unusual? I know this is a lifetime risk, but I seem to be the only one I can find with such late-onset lymphedema.

Ms. Cohn: The best research paper published regarding your question found that the majority of lymphedema occurs within the first 3 years after diagnosis; however, they found that there was a small, but steady accrual of cases in the following years. I personally treated a woman who first had swelling 30 years after her treatment for breast cancer.

You are correct in saying that there is a lifetime risk, so I always counsel women to just ‘live smart’. The best information in this regard can be found in the Position Paper on Risk Reduction available from the National Lymphedema Network at their website, www.lymphnet.org

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Question: I have been terribly lucky and have not had lymphedema much at all, but I am now terrified to travel by airplane as I have heard that flying can bring it on. Would wearing a sleeve help? Would one use a gauntlet as well? Any other suggestions? I know that it's easier to get recurrences of lymphedema once you've had it, so my goal is to not get it in the first place.

Ms. Duczak: The change in cabin pressure during flying alters circulation in the body, increasing the chance for swelling to occur. The sedentary nature of a flight in addition to the tendency for dehydration and need for heavy lifting (i.e. luggage) also increase the risk. 

While there are no specific recommendations for wearing compression to prevent lymphedema during air travel, I think use of a compression sleeve is appropriate in this situation. It must be fitted properly — I recommend you see a lymphedema therapist or a certified fitter. I do recommend that you use a gauntlet, as well, because if swelling does develop, there is a chance it will include the hand. 

Move your arms throughout the flight and stay well hydrated. The risk of swelling from flying is only considered to be while you are in the air, but I usually recommend people keep the sleeve and gauntlet on until you reach the baggage claim and have picked up your luggage. You can be sure your circulation will have stabilized by that time.

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Question: Do you know why medical supply places require a prescription to buy a sleeve — or does that vary by state perhaps? Can I buy one online without a prescription?   

Ms. Duczak: Medical supply companies usually require a prescription in order to bill insurance and to ensure that you receive the appropriate type of compression for your lymphedema (they are not medical professionals and cannot prescribe garments.) You can buy compression garments online without a prescription, but I would recommend being evaluated by your physician or a lymphedema therapist prior to doing so.

A trained medical professional should determine what compression garment is right for you. A compression sleeve or glove that does not fit properly or is not the right compression level will not control your swelling and could worsen your condition. 

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Question: Is lymphatic drainage massage encouraged or discouraged? What about dry brushing? 

Ms. Duczak: Manual lymphatic drainage is encouraged for patients who have or are at risk for developing lymphedema. Research supports its use to improve lymphatic circulation. It is usually incorporated into lymphedema treatment and is taught to the patient for maintenance of the arm. I don’t know of any evidence for dry brushing helping with lymphedema or lymphatic circulation at this time. Dry brushing does likely increase circulation by increasing blood flow, but not of the lymphatic system specifically. 

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Question: Would you address the number of axillary lymph nodes removed and risk of lymphedema? It seems that some resources say a sentinel node biopsy of 1 or 2 nodes would be a low risk for lymphedema. Other resources say that with removing more than 10 or 11 nodes the risk for lymphedema increases. 

Ms. Duczak: It is true that the more axillary lymph nodes you have removed, the greater your risk of developing lymphedema. Removing 1–2 may not have as much of an impact as removing 10–15. With that being said, removal of lymph nodes is not the only risk factor for developing lymphedema.

For example, many women who have sentinel node biopsies undergo radiation therapy. Radiation therapy significantly increases the risk of developing lymphedema due to the trauma and scarring that occurs to the lymphatic vessels. Trauma, infection and obesity are also risk factors. So while it is true that the more lymph nodes you have removed, the greater your risk, there are still other factors that you should consider in your overall risk for lymphedema.

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Question: I have had chemo, bilateral mastectomy, [removal of] lymph nodes (4) and radiation in 2011 – 2012. I have left-side armpit and trunk swelling, will this ever go away? 

Ms. Duczak: Surgery and radiation cause a lot of tissue trauma and can cause swelling in the chest, trunk and arm. Typically, swelling after surgery and radiation therapy will reduce in 6 months to 1 year. However, sometimes it can be a little longer. Lymph node removal and radiation therapy both increase your risk of developing lymphedema, so I would recommend that you be evaluated by your physician or a lymphedema therapist to determine if this could possibly be a lymphatic condition. Whether it is regular swelling or lymphedema, there are treatment options that could help reduce this. 

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Question: Where online can I go to get proper exercise information for making me better and more comfortable? 

Ms. Duczak: This is a very general question, as I do not know exactly what your complaints are or what treatment you have had. The websites for the National Lymphedema Network ( www.lymphnet.org) and the American Cancer Society ( www.cancer.org) give general information about returning to exercise after cancer treatment and reducing your risk for developing lymphedema. Flexibility, strength and endurance all are significantly impacted by cancer treatment. This can increase your risk of injury when returning to exercise. Many patients do well with a short course of physical therapy, to address their specific issues and to get assistance on returning to a safe and appropriate exercise program. 

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Question: I only had 2 nodes removed during my sentinel node biopsy. Am I really at risk of lymphedema? How high is my risk?

Ms. Duczak: Having a sentinel node biopsy significantly reduces your risk for developing lymphedema. The fewer nodes removed, the better. With that being said there are other risk factors that can increase your likelihood of developing lymphedema. Radiation therapy, trauma to the arm, infection and obesity are some of these risk factors.  So if you have only had two nodes removed, I would say you are low risk, but if you have any of these other risk factors your risk will be higher. The more factors you have, the higher the risk. 

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Question: I do have sleeves, and I wear one every day.  I want to know if it is safe to use my arm for things like using a hammer, pulling weeds, or working out with weights while I have it on? 

Ms. Duczak: All these activities can be safe for you if they are done properly. The motto is “start low - progress slow.” You want to gradually increase your activity level, monitoring for any symptoms or changes in your arm (i.e. pain, swelling, feelings of fullness or heaviness).  Don’t go out and do all these activities on the same day. Break them up on to different days to give your arm a break. And if you are weight training, you should start with the lowest weight possible and work up gradually. 

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