Lymphedema Overview

What is Lymphedema? How Can Lymphedema be Managed?

Lymphedema Overview

Medically reviewed 10/2018

Lymphedema is the buildup of lymph fluid in the tissues just under the skin, resulting in swelling, tightness and discomfort in the affected limb. Damage to or blockage of the lymph system is the cause of lymphedema, and in cancer patients, this damage is usually due to surgery or radiation therapy. While there is no single treatment for lymphedema, steps can be taken to manage the symptoms, including compression of the area, a specific type of massage to increase lymph flow and specialized exercises.

What is lymphedema

Lymphedema is the buildup of lymph fluid in the tissues just under the skin. As the blood travels into smaller and smaller vessels, excess fluid, protein and other substances are pushed out into the surrounding tissue. This substance is called lymph fluid. Under normal circumstances, lymph fluid is removed from the tissues by the lymph system, which is a series of vessels and organs that move the fluid back toward the heart and filter it through lymph nodes. Lymph nodes are specialized structures that are composed of white blood cells and serve to “clean” the lymph fluid of bacteria or other contaminants. If there is damage to or blockage in the lymph system, the lymph fluid cannot be removed and builds up in the tissues.

What causes lymphedema

Lymphedema is caused by blockage or damage to the lymph system. It may be caused by cancer treatment or the cancer itself. Damage to the lymph system by surgery or radiation is the primary cause of lymphedema in cancer patients, especially when treatment is conducted in the underarm, groin, pelvic, or neck regions. Swelling may occur immediately after treatment, or it may arise weeks, months or even years later. Lymphedema commonly occurs in patients with breast cancer who had lymph nodes removed in the underarm and/or received radiation to that area.

Lymphedema that is caused by the cancer itself is usually related to:

  • Spread (metastasis) to the lymph nodes in the neck, chest, underarm, pelvis or abdomen
  • Growth of tumors (cancer) in the pelvis or abdomen that block lymph drainage by involving or putting pressure on the lymphatic vessels and/or the large lymphatic duct in the chest

What are the symptoms of lymphedema

Notify your doctor if you have any of the following symptoms:

  • Feelings of tightness in the arm or leg
  • Decreased flexibility in a hand, elbow, wrist, fingers or leg
  • Difficulty fitting into clothing
  • Ring, wristwatch, bracelet, shoe that fits tighter than usual
  • Pain, aching, heaviness, or weakness in the arm or leg
  • Redness, swelling, or signs of infection
  • Skin that feels stiff or taut
  • Pitting (small indentations left on the skin after pressing on the swollen area)

How is lymphedema managed

While there is no single treatment for lymphedema, steps can be taken to manage the symptoms.

Compression garments: Your doctor may recommend that a specially made “elastic sleeve” be worn on the affected limb. This sleeve provides compression and has been shown to significantly reduce swelling. Talk with your doctor about when and how to use compression garments. Some people need to use compression garments both day and night.

Manual lymphatic drainage: This is a specialized form of very light massage that helps to move fluid from the end of the limb toward the trunk of the body. Manual lymphatic drainage is different from standard massage and should be performed by a trained professional. This individual may be able to teach you ways that you can massage yourself to increase lymph flow.

Exercise: Lymphatic drainage is improved during exercise. Your doctor or physical therapist will recommend specific exercises.

How can lymphedema be prevented

Lymphedema occurs less frequently now than in the past because of improved surgical techniques. Historically, when breast cancer was thought to spread to the lymph nodes, the surgeon would remove as many lymph nodes as possible. This approach would sometimes cause severe lymphedema. Recently, a technique has been developed that makes it possible to remove only one lymph node, called the sentinel node. The sentinel node is the first node that drains a particular area, such as the breast. In a sentinel node biopsy, the surgeon injects a dye into the affected area to identify which node is the first to be marked by the dye. If the sentinel lymph node is free of cancer, then it is unlikely any of the other lymph nodes located “downstream” have cancer and they are not removed.

What else can I do

Try these tips for managing or reducing lymphedema:

  • Keep the arm or leg raised above the level of the heart, when possible.
  • Clean the skin of the arm or leg daily and moisten with lotion.
  • Avoid injury and infection of the arm or leg.
  • Avoid tight clothing.
  • Do prescribed exercises regularly as instructed by your doctor or therapist.
  • Avoid pressure on the arm or leg:
    • Do not cross legs while sitting.
    • Do not carry a handbag on the arm that is swollen
    • Wear loose jewelry; wear clothes without tight bands.
    • Do not use blood pressure cuffs on the affected arm.
    • Do not sit in one position for more than 30 minutes.

What is a Lymphovenous Bypass

Emmie Cheses has been in the very fortunate position of being able to take preventive action against lymphedema. When Emmie, of Columbus, Ohio, was diagnosed with breast cancer with lymph node involvement at age 45, she was able to undergo prophylactic surgery with an innovative technique known as lymphovenous bypass to significantly reduce the risk of lymphedema.

The procedure is one of two current innovations in lymphedema treatment—the other being vascu­larized lymph node transfer. Both approaches stand to revolutionize outlooks for both patients at risk of the condition and those looking for effective treatment.

The lymphatic system is a major part of the body’s immune system—a network of organs, nodes, ducts, and vessels that make and move lymphatic fluid from tissues to the bloodstream. Lymph nodes are found, among other areas, under the arm (axillary), in the neck, and in the groin.

As a result of this imbalance of fluid production and clearing, the fluid—which carries blood cells (mostly blood cells called lymphocytes)—accumulates in the affected area of the body and causes that area to swell. This swelling, or lymphedema, usually occurs in the extremities (arms and legs).

“I liken the lymphatic system to a French drain for a home,” says Dr. Skoracki. These drains, placed outside of houses, are trenches filled with gravel or rock that contain a perforated pipe to redirect surface and groundwater away from an area. “The lymphatic system,” he explains, “is composed of leaky vessels that allow fluid and large protein molecules to come in and also has a pump mechanism (muscles and valves) to move fluid through.” When the lymphatic system is functioning properly, it pushes fluid to the lymph nodes to filter and recycle in the bloodstream.

When this process is interrupted due to lymph node damage or removal, however, the fluid doesn’t get pumped through and instead accumulates to cause the swelling associated with lymphedema. Damage, says Dr. Skoracki, in the industrialized world is often the result of interventions during cancer treatment but can also be caused by other health issues, such as infection and inherited conditions.

“The majority of lymphedema cases are due to disruption of the lymph system during cancer treatment,” he explains. Specifically, lymph nodes are at risk when cancer has spread to them, and they need to be removed—such as in breast cancer that spreads to the axillary nodes. Radiation therapy around the lymph nodes can also damage them, as can tumors that have a direct impact on the nodes.

A Patient Takes Charge

Even though lymphedema management and care is a growing therapeutic area, Emmie decided she wanted to do everything possible to prevent the side effect from developing in the first place. As an active mother, she felt she could not accept the risk of any loss of function.

“I was concerned that lymph­edema would change my life,” Emmie says. Not only do her responsibilities as a mom demand the mobility and use of her arms, she’s also a tennis player and loves outdoor pursuits.

Emmie quickly learned that she had considerable risk of lymph­edema with the diagnosis of breast cancer with lymph node involvement and its prescribed treatment. In addition to surgery to remove the cancer, she would undergo axillary node dissection (removal of these nodes) with chemotherapy and radiation.

“I did a lot of reading,” she says, “and I learned that with my treatment plan, my risk of lymphedema was higher than with fewer modal­ities.” Armed with this information, she planned prophylactic lym­phovenous bypass surgery with Dr. Skoracki.

Emmie was able to combine the lymphovenous bypass procedure with the breast cancer surgery. This greatly minimized the impact of the additional intervention, as Dr. Skoracki used the same incision to perform the bypass procedure and to remove the cancerous axillary nodes.

How Innovations In Lymphedema Treatment Work

The surgery that Emmie had—lym­phovenous bypass—is a relatively new treatment that has been used for about 10 to 15 years, according to Dr. Skoracki. He explains that it involves creating a shunt, or detour, for the lymphatic fluid when its usual course is blocked—another vessel in which the fluid can travel. He likens it to building an on-ramp to link traffic from a congested road to an open road. “The bypass creates a connection to carry away excess fluid,” he says. During the procedure, he creates two to seven bypasses.

Lymphovenous bypass is considered minimally invasive because the lymph vessels are located right under the skin. Dr. Skoracki adds that he sees results quickly, and patients can generally go home after spending one night in the hospital for antibiotics.

The other innovative lymph­edema treatment, vascularized lymph node transfer, is the newer of the two procedures. It was pioneered in Taiwan and Europe about eight years ago, says Dr. Skoracki. In vascularized lymph node transfer, the surgeon takes a group of healthy lymph nodes—or a “cluster,” as he explains—from a donor site and places them in the area with lymph node damage.

“The transferred lymph nodes,” says Dr. Skoracki, “sprout channels to reconnect to surrounding lymphatic channels. So, once transplanted, these nodes establish themselves and become part of the lym­phatic system in their new location.

Results with lymph node transfer are not as quick as with the bypass procedure. The nodes have to make their own connections, which takes about three months. Transfer is also the more invasive of the two, as it requires two incisions: the donor and transfer sites. Dr. Skoracki says that patients stay in the hospital for a few days after surgery to make sure the transfer worked.

With these two options in lymph­edema procedures, doctors are able to choose which approach is best for each patient. According to Dr. Skoracki, the outcomes with lymph node bypass and transfer are similar, but because bypass is less invasive it’s his first-line preference for eligible patients.

“The bypass is generally my first choice,” he explains. “I reserve the lymph node transfer for those patients who are not candidates for the bypass or received insufficient relief from the bypass procedure.” In general, patients for whom bypass is not appropriate have had lymphedema for a while and have developed so much scarring that the superficial lymphatic channels (the ones accessed just under the skin) are no longer usable, making bypass ineffective.

A Bright Future

Almost two years after breast cancer treatment and lymphove­nous bypass, Emmie’s outcome is looking positive. “As of now I’m doing well,” she says. She is, however, still vigilant in her lymph­edema prevention, ever conscious of the fact that treatment reduced the risk of lymphedema but didn’t completely eliminate it.

“I’m very careful with my right [affected] arm,” Emmie says, explaining that she basically takes the same precautions she would if she had lymphedema. This includes no blood pressure cuffs or needle sticks on her right arm, and she wears a compression sleeve when she flies. Emmie says that she will also do the prescribed stretches and physical therapy indefinitely to keep risk at bay.

What These Innovations Mean On A Larger Scale

Emmie was fortunate that she had, in Dr. Skoracki, convenient access to a surgeon who is performing both lymphovenous bypass and vascularized lymph node transfer, but not all patients have the same opportunity. There are currently few surgeons performing either procedure in the United States, and each requires a specialized microsurgery facility.

Dr. Skoracki is hopeful, however, that by contacting facilities that are known for performing the procedures, such as The OSUCCC— James patients can find accessible centers and physicians who are doing the techniques. He also says that the innovations bring attention to lymph­edema treatment overall: “It’s an exciting time. There’s so much interest in lymphedema on so many levels, which is good news for advances in awareness, therapies, and surgery.”

Lymph Node Transplantation May Improve Lymphedema

According to a study published in the Annals of Surgery, breast cancer patients who develop lymphedema after removal of axillary lymph nodes may benefit from having lymph nodes transplanted from the groin to the axilla.

Though sentinel lymph node biopsy (removal of only one or a few lymph nodes) is increasingly being used in the staging of early breast cancer, many women have undergone the more extensive removal of axillary (under the arm) lymph nodes; this procedure is known as axillary lymph node dissection. Side effects of axillary lymph node dissection may include pain, infection, limited shoulder motion, numbness, and lymphedema (swelling of the arm due to an accumulation of lymph fluid).

In an attempt to improve lymphedema in women who have undergone axillarly lymph node dissection for breast cancer, researchers in France evaluated the effect of lymph node transplantation. In this process, lymph nodes are removed from the groin and transplanted into the axilla. The researchers have used this procedure for 12 years. They have reported on outcomes in 24 breast cancer patients.

The patients had all undergone mastectomy and axillary lymph node dissection, and most had also received radiation therapy. All had lymphedema that was resistant to physical therapy. Patients were followed for an average of 8 years after lymph node transplantation.

After the lymph node transplantation surgery, patients received manual drainage (a type of massage that helps move fluid out of the arm) daily for the first three months and then twice a week for the next three months.

  • Arm circumference returned to normal in 10 patients, decreased in an additional 12 patients, and did not improve in two patients.
  • During follow-up, 17 patients had no problems with infection in the affected arm, and seven patients experienced only one episode of infection.
  • Physical therapy was successfully discontinued in 63% of patients. Most of these patients were able to stop therapy after six months.

The researchers conclude that lymph node transplantation appears to be a safe and effective treatment for lymphedema. Outcomes may be best for women who undergo lymph node transplantation earlier in the course of their lymphedema.

Exercise and fitness train­ing provide valuable ben­efits for patients during and after cancer treat­ment.

Many survivors can experience per­sistent fatigue, deficits in strength and range of motion, decreased ability to manage work and home tasks, and lymphedema. Studies are increasingly indicating that exercise can help combat many of these side effects of treatment.

One of the goals of Exercise is to encourage fit­ness without incurring pain or injury that could trigger or exacerbate lymphedema. Recent studies have demonstrated that regular exer­cise, including strength training, may decrease the risk of lymphedema or diminish symptoms of the condition if it is already present.

We hope that by providing infor­mation about how to perform exer­cises safely and use good technique to improve flexibility, strength, and function, we can help survivors who are experiencing lymphedema enjoy the many physical and psy­chological benefits of exercise. The following excerpt offers valuable insight into safe and effective strate­gies for managing lymphedema and exercise.

Decreasing the Risk of Lymphedema

One of the most important things you can do to decrease your risk of lymphedema is to maintain a healthy weight. It is also im­portant to learn proper nutrition and the ap­propriate exercise routines for your specific needs.

The following are additional steps one should take to decrease the chance of devel­oping lymphedema:

  • Try to avoid extreme temperatures, and avoid sunburns.
  • Avoid restricting your lymph circulation. Examples of this would be taking blood samples from or blood pressure on the affected arm, carrying a heavy bag on your arm, or wearing tight clothing and jewelry.
  • Check regularly for infection, and call your doctor immediately if an infection occurs. Insect bites, scratches, skin punctures, and bites can cause infections.
  • Wash the affected area frequently and apply moisturizer to avoid cracks in the skin.

The National Lymphedema Network’s website (lymphnet.org) is a terrific re­source. You should also speak with your therapist for a complete list of lymphedema precautions.

Lymphedema Therapist

Learn the first signs of lymphedema; it is easier to manage if treated early. Your lymphedema specialist will teach you com­plex decongestive therapy, consisting of skin care, manual lymph drainage, and exercise. If you meet with your lymphede­ma specialist at the first signs of swelling, pitting, redness, or heaviness, lymphedema can be kept under control. The specialist will also make sure that your exercise plan is compatible with the treatment and will clear you to exercise if your lymphedema is under control.

Additionally, if baseline measurements have not already been taken at the hospital, it is recommended that you obtain a base­line girth measurement by a lymphedema specialist. The limbs that are at risk for lymphedema should be periodically mea­sured to make sure they have not changed in size. Symptoms can be managed more easily if dealt with as soon as they appear.

A compression garment or sleeve, which supports the muscles and helps bring the lymphatic fluid to the heart, can be worn while exercising and at other times. These garments need to be professionally fitted and monitored by a lymphedema specialist.

Exercise and Lymphedema

Your body will work better if you are en­gaged in regular physical activity. More­over, exercise is very helpful for lymphede­ma control, but it must be done in a safe manner if lymph nodes have been removed or radiated. If you have lymphedema, you should begin to exercise under professional guidance after receiving medical clearance. It is important to learn the right exercis­es for your particular situation and how to perform them properly and with good form. Exercise needs to progress slowly, us­ing a properly fitted garment. Our goal is to promote physical activity without incur­ring pain or injury, which can make lymph­edema worse.

All the exercises should incorporate abdominal breathing and relaxation breath­ing. These breathing techniques are beneficial because they do the following:

  • Stimulate lymph flow and lymphatic drainage
  • Act as a lymphatic system pump, moving the sluggish lymph fluid
  • Enable oxygen to get to the tissues
  • Reduce stress, a common cancer side effect

It is also helpful to incorporate Pilates into your exercise routine because of the deep breathing used with each movement. When you begin Pilates exercises, perform just a few repetitions and use no weights or use the lightest machine tension. After you are able to exercise for several sessions without flare-ups, you can use resistance bands, light weights, and modified body-weight exercises.

You can develop a good fitness level without triggering lymphedema. Swim­ming is a very good exercise for those with lymphedema. The water creates compres­sion. Because repetitive motions are risky, try to vary your swimming strokes. The water should not be hot, and the pool area should be clean to help you to avoid in­fection. When you leave the water, follow proper skin care precautions. Moisturize to prevent dry skin, which can lead to cracks in the skin and infection.

Yoga poses can cause flare-ups. Do not perform the following poses: down­ward-facing dog, upward-facing dog, plank, and side plank. Avoid hot yoga.

Exercise helps the lymphatic fluid move throughout the body. Muscles pump and push the lymph fluid and can help move the lymph away from the affected area. Strength training may help pump the lymph fluid away from the affected limb, but it does not necessarily prevent lymphedema. Slow progression of exercise will allow you to monitor fullness or aching, which can indicate stress to the lymphatic system. You should stop if you feel tired or if your limb aches or feels heavy.

Carol Michaels is the founder and creator of Recovery Fitness®, an exercise program designed to help cancer patients recover from surgery and treatments. Carol re­ceived her degree from the Wharton School of the University of Pennsylvania. She is certified by the American Council on Ex­ercise and the American College of Sports Medicine (ACSM), is Pilates certified, and is a member of ACSM and IDEA Health & Fitness Association.

Weight Training May Not Increase Risk of Lymphedema

In a study of breast cancer patients who had undergone surgery to remove axillary (underarm) lymph nodes, a six-month program of twice-a-week weight training did not increase the risk of developing lymphedema, and did not worsen existing lymphedema symptoms. These results were published in the Journal of Clinical Oncology.

Though sentinel lymph node biopsy (removal of only one or a few lymph nodes) is increasingly being used in the staging of early breast cancer, many women have undergone more extensive removal of axillary (under the arm) lymph nodes; this procedure is known as axillary lymph node dissection. Side effects of axillary lymph node dissection may include pain, infection, limited shoulder motion, numbness, and lymphedema (swelling of the arm due to an accumulation of lymph fluid).

Because of concern that upper-body exercise may increase the risk of developing lymphedema or worsen existing lymphedema, breast cancer survivors are sometimes advised to avoid vigorous or repetitive upper-body exercise. These recommendations, however, are based on limited evidence.

To evaluate the effect of upper- and lower-body weight training on lymphedema, researchers conducted a study among 45 breast cancer survivors who had undergone axillary lymph node dissection. Study participants had completed treatment between four and 36 months before the study began, and 13 of the 45 subjects already had lymphedema.

Half the study subjects participated in a weight training program and half did not. Subjects who participated in the weight training program attended two sessions per week over a period of six months. The program involved nine exercises targeting the arms, back, chest, buttocks, and legs. For upper-body exercises, participants initially used no weights or wrist weights. Weight was gradually increased as long as no symptoms of lymphedema developed.

  • Over a six-month period, none of the women who participated in the weight training program experienced a notable (greater than or equal to 2 cm) change in arm circumference.
  • The frequency of new lymphedema, or worsening of lymphedema symptoms, was similar in the women who did and did not participate in the weight training program.

The researchers conclude that current recommendations against upper-body weight training in breast cancer survivors may need to be reevaluated. Weight training brings a range of health benefits, and the current results suggest that it may not increase the risk of lymphedema in breast cancer survivors.

Breast cancer survivors who are considering an exercise program may wish to talk with their doctor about safest and most effective approach.

Live Web Chat with the Experts: Managing Lymphedema

Dr. Stephen Edge and Kathleen Fassl, PT from Roswell Park Cancer Institute discuss and field questions on managing lymphedema in this Web Chat. Dr. Edge is the Medical Director of the Breast Center and the Chief of Breast Surgery in the Department of Surgical Oncology at Roswell Park Cancer Institute. Ms. Fassl is the Co-Director of Lymphedema Management Services at Roswell Park Cancer Institute. Click here for Dr. Edge’s bio and here for Ms. Fassl’s bio.

Axillary Radiotherapy Reduces Lymphedema in Breast Cancer

Patients with early breast cancer had significantly less lymphedema if they received axillary radiotherapy instead of surgical lymph node dissection, according to the results of a study presented at the ESMO 2013 Congress of the European Society for Medical Oncology in Amsterdam.

For women with early breast cancer, determining whether the cancer has spread to the axillary (under the arm) lymph nodes is an important part of cancer staging. Evaluation of the axillary nodes often involves a sentinel lymph node biopsy. The sentinel nodes are the first lymph nodes to which cancer is likely to spread. If the sentinel nodes contain cancer, women often undergo more extensive lymph node surgery (axillary lymph node dissection). A common side effect of axillary lymph node surgery is lymphedema of the arm—swelling of the arm due to an accumulation of lymph fluid.

The AMAROS trial was a phase III clinical trial that included 4,806 patients—1,425 of whom were determined to have positive sentinel lymph nodes (those that contained cancer). These patients were randomized to receive surgical axillary dissection or radiotherapy.

The results indicated that the two treatment strategies produced similar low rates of axillary recurrence. The five-year disease-free and overall survival did not differ significantly between the two groups.

Women who underwent surgical axillary dissection had a 21 to 25 percent incidence of clinically significant lymphedema over five years, compared to 10 to 15 percent for those who underwent radiotherapy. Patients who underwent both surgery and radiation had the highest rates of lymphedema.

Lymphedema was assessed at 1, 3, and 5 years and compared among patients who underwent axillary lymph node dissection, axillary radiotherapy, or both forms of treatment. The assessment included clinical observation and measurement of arm circumference at multiple points.

Clinical observation revealed that lymphedema rates with surgery were 25.6 percent at 1 year, 21 percent at 3 years, and 20.8 percent at 5 years. In contrast, the rates of lymphedema with radiation were 15 percent at 1 year, 13.4 percent at 3 years, and 10.3 percent at 5 years.

Patients who underwent both surgery and radiation had lymphedema rates of 59.4 percent at 1 year, 44.8 percent at 3 years, and 58.3 percent at 5 years.

Lymphedema also was defined as an increase in arm circumference by more than 10 percent. By that definition, the rates at 1, 3, and 5 years were:

  • Surgery: 7.2 percent, 9.2 percent, and 11.7 percent
  • Radiation: 5.9 percent, 6.2 percent, and 5.7 percent
  • Both: 14.8 percent, 24.1 percent, and 29.2 percent

The researchers concluded that patients with early breast cancer had significantly less lymphedema if they received axillary radiotherapy instead of surgical lymph node dissection. They note: “Considering overall morbidity, axillary radiotherapy is the preferred treatment over axillary lymph node dissection in patients with a positive sentinel node. Since the combination of axillary surgery and radiation increases

Predicting Risk of Lymphedema in Breast Cancer

Researchers have developed a tool that considers several patient and treatment characteristics in order to predict the risk of lymphedema after axillary lymph node dissection (removal of several under-the-arm lymph nodes) for breast cancer. These results will be presented at the 2011 Breast Cancer Symposium.

Lymphedema refers to swelling due to an accumulation of lymph fluid. Women with breast cancer may develop lymphedema in an arm after axillary lymph nodes are removed. More extensive removal of lymph nodes (known as axillary lymph node dissection) is more apt to cause lymphedema than the removal of only a small number of nodes (known as a sentinel lymph node biopsy), but lymphedema can occur following either procedure.

Roughly one-third of women who undergo axillary lymph node dissection develop lymphedema. Tools to help manage lymphedema include manual lymphatic drainage, use of compression bandages and garments, training in skin and nail care (in order to reduce the risk of infection), and instruction in exercises.

Among women who undergo axillary lymph node dissection, it’s been uncertain why some women develop lymphedema and others don’t. In order to predict which women are at highest risk of lymphedema, researchers explored how lymphedema risk varied by patient characteristics and type of cancer treatment.

Factors that were linked with lymphedema risk included age, body mass index, infusion of chemotherapy into the arm on the same side of the body as the breast cancer, extent of lymph node removal, location of the radiotherapy field, postoperative seroma (fluid build-up), infection, and early edema (swelling). An initial estimate of lymphedema risk can be obtained prior to surgery, and risk estimates can then be modified based on information collected after surgery.

The statistical models had an accuracy of more than 70% for the prediction of lymphedema. Although these models continue to be refined, they could eventually provide important tools for counseling and managing women before and after axillary lymph node dissection.

Study Evaluates Incidence of Lymphedema Resulting from Cancer Treatment

A systematic review of 47 studies evaluating treatment for melanoma, head and neck cancer, genitourinary cancers, gynecologic cancers, and sarcoma indicates that lymphedema is a common side effect of treatment for these diseases. These findings were recently published in the journal Cancer.[1]

Lymphedema is the buildup of lymph fluid in the tissues just under the skin, resulting in swelling, tightness, and discomfort in the affected limb. Damage to or blockage of the lymph system is the cause of lymphedema, and in cancer patients this damage is usually due to surgery or radiation therapy. While there is no single treatment for lymphedema, steps can be taken to manage the symptoms, including compression of the area, a specific type of massage to increase lymph flow, and specialized exercises. Although the incidence of lymphedema resulting from the staging and treatment of early breast cancer is well understood, less is knowm about this side effect in other cancer types. Researchers recently conducted a study to determine the incidence and risk factors of lymphedema in cancer types other than breast cancer.

In this study researchers systematically reviewed data from 47 clinical trials conducted between 1972 and 2008. The studies included data on lymphedema assessment following treatment of melanoma, gynecologic cancers, genitourinary cancers, head and neck cancer, as well as sarcoma. In these studies the researchers determined that the overall incidence of lymphedema was 15.5%. Among patients undergoing pelvic lymph node dissection, 22% experienced lymphedema (see Table 1). In addition, 31% of the patients in these studies who underwent treatment with radiation therapy reportedly experienced lymphedema. The researchers also determined that data from these studies indicated that longer follow-up was associated with an elevated incidence of lymphedema. Interestingly, studies that included objective measurement strategies for lymphedema reported elevated incidence of this side effect.

Table 1: Lymphedema incidence and number of studies analyzed by cancer type

The researchers concluded that the incidence of lymphedema resulting from the treatment of cancer is associated with a variety of factors, including cancer type as well as type and extent of treatment. In addition, the reported incidence is a factor of the length of follow-up as well as method of lymphedema assessment. Patients undergoing treatment of their cancer with radiation therapy or surgical removal of lymph nodes should ask their healthcare team about the risk of lymphedema and what they can do to help prevent and manage this side effect.

According to the results of a study published in the journal Cancer, weight loss may significantly reduce breast cancer-related lymphedema in overweight women.

Lymphedema is the buildup of lymph fluid in the tissues just under the skin, resulting in swelling, tightness, and discomfort in the affected limb. Damage to or blockage of the lymph system is the cause of lymphedema, and in cancer patients, this damage is usually due to surgery or radiation therapy.

While there is no single treatment for lymphedema, steps can be taken to manage the symptoms, including compression of the area, a specific type of massage to increase lymph flow, and specialized exercises.

Obesity has been linked with an increased risk of breast cancer-related lymphedema, and may also decrease the effectiveness of lymphedema treatment.

To explore the effect of weight reduction on lymphedema severity, researchers conducted a study among 21 women with breast cancer-related lymphedema. All the women had a swollen arm with at least 15% excess volume compared with the unaffected arm, and all the women had a body mass index (BMI) of at least 25. A BMI of 25 to 29 is considered overweight and a BMI of 30 or higher is considered obese.

Half the women were given individualized dietary advice for weight reduction (the intervention group), and half the women received a booklet on healthy eating (the comparison group). Women in both groups received conventional lymphedema treatments, including use of a compression sleeve.

Most of the women in the intervention group were advised to consume between 1000 and 1200 kcal per day. Their actual intake by the end of the study was 1452 kcal per day (down from an average of 1865 kcal per day at the start of the study).

Study outcomes were assessed after 12 weeks.

  • Women in the intervention group lost an average of more than seven pounds. Women in the comparison group maintained a steady weight.
  • Among women in the intervention group, average excess arm volume declined from 24% to 15%. Among women in the comparison group, excess arm volume did not change.
  • Women with a greater amount of weight loss tended to have a greater decline in excess arm volume. And while both the affected and the unaffected arms declined in volume among women in the intervention group, the affected arm lost more volume (average of 350 mL) than the unaffected arm (average of 121 mL).

The researchers conclude that “weight loss achieved by dietary advice to reduce energy intake can reduce cancer-related lymphedema significantly.” They also note that as women lose weight, it will be important to regularly reassess the fit of compression sleeves.

Weight Lifting May Be Safe for Breast Cancer Survivors with Lymphedema

Among breast cancer survivors with stable lymphedema, a program of twice-weekly, slowly progressive weight lifting increased strength and reduced lymphedema symptoms without affecting arm and hand swelling. These results were published in the New England Journal of Medicine.

Lymphedema refers to swelling of the arm due to an accumulation of lymph fluid. It commonly affects women who have had axillary (underarm) lymph nodes removed for the staging of early breast cancer. The extensive removal of lymph nodes (known as axillary lymph node dissection) is more apt to cause lymphedema than the removal of only a small number of nodes (known as a sentinel lymph node biopsy), but lymphedema can occur following either procedure.

Because of concern that upper-body exercise may increase the risk of developing lymphedema or worsen existing lymphedema, breast cancer survivors are sometimes advised to avoid heavy lifting and other upper-body exercises. These recommendations, however, are based on little evidence.

Determining whether weight lifting is safe for breast cancer survivors is important because this type of exercise can provide important benefits, including an increase in bone density.

To explore the effects of weight training among breast cancer survivors with lymphedema, researchers conducted a study among 141 women with stable lymphedema of the arm. Half the study participants were assigned to a weight lifting program, and the other half served as the comparison group.

The weight lifting group received a one-year membership at a community fitness center. For 13 weeks women met in small groups with a fitness instructor for two 90-minute workouts per week. The exercise sessions included stretching, a cardiovascular warm-up, abdominal and back exercises, and weight lifting. Weight lifting included both upper-body and lower-body exercises. Weight was gradually increased over a period of several weeks so long as no changes in symptoms occurred. After the first 13 weeks, study participants were asked to continue exercising on their own twice a week. Women wore a compression garment while weight lifting.

Women in the comparison group were asked not to change their activity levels during the study. These women were offered a one-year fitness center membership and 13 weeks of instruction after the study ended.

  • An increase in limb swelling of 5% or more occurred with similar frequency in the two study groups (11% of women in the weight lifting group experienced an increase in swelling compared with 12% of women in the comparison group).
  • Women in the weight lifting group had greater improvement in self-reported lymphedema symptoms than women in the comparison group. Women in the weight lifting group also had greater improvements in upper- and lower-body strength and fewer lymphedema exacerbations.

These results suggest that a slowly progressive weight lifting program does not increase limb swelling among breast cancer survivors with arm lymphedema, and provides benefits such as increased strength and reduced symptoms.

Breast cancer survivors with arm lymphedema may wish to talk with their doctor about what upper-body exercises are safe and beneficial and how to go about starting an exercise program.

The Lemons

In March 2005 I was diagnosed with Stage III breast cancer at the age of 21. Because I was young and my tumor was large and already spreading to my lymph nodes, I was treated very aggressively. I underwent chemotherapy, bilateral mastectomies, multiple reconstructive surgeries, and radiation. To get all the cancer cells, my doctors also removed a large cluster of lymph nodes from my armpit.

I sincerely hoped that once I was finished with radiation, I would be able to go back to a somewhat “normal” life. Unfortunately, shortly after I finished treatment I developed lymphedema in my right arm. Lymphedema is an accumulation of lymphatic fluid that causes tissue swelling, most often in an arm or leg, and occasionally in other parts of the body. Although lymphedema can strike anyone at any age, most cases are the result of cancer or cancer treatment. Over time untreated lymphedema can lead to disfigurement, disability, and even death.

Treatment for lymphedema includes all of the following: a light massage called manual lymph drainage (MLD), which redirects the fluid from the affected side to another healthy cluster of lymph nodes; light stretches and exercises; and the use of compression bandages and garments. These garments need to be worn 24 hours a day, are expensive, and must be replaced every four to six months. The first intensive round of treatment is usually administered by a certified lymphedema physical or occupational therapist and is followed up with self-care at home.

The diagnosis of lymphedema was much harder for me to accept than my cancer diagnosis. To me breast cancer seemed to have a starting point and an end point. Lymphedema, however, serves as an everyday reminder of what I have been through. I need to do self-MLD every day and wear compression garments by day and bandages at night. There is never a moment when I can just take my dog for a walk without wearing a sleeve and glove or sleep out somewhere without bringing bandages. Infection is another big concern, as the smallest cut or even a mosquito bite can cause a potentially fatal infection called cellulitis in my arm.

The Lemonade

Despite the hardship, having lymphedema has become a blessing in disguise and has given meaning to my life. I am now officially a five-year survivor, and I find that helping others navigate their cancer and lymphedema treatment enables me to deal with my own reality.

I am currently working for the National Lymphedema Network (NLN), a nonprofit organization dedicated to creating awareness of lymphedema, where I am very involved in patient advocacy and in communication and education efforts for both patients and medical professionals. I also manage the Marilyn Westbrook Garment Fund, which provides lymphedema garments to patients who cannot afford them.

I am also working with the NLN on getting a new bill passed through Congress that will mandate that Medicare pay for lymphedema garments. An estimated 1.5 to 3 million Medicare beneficiaries are currently not receiving the treatment that they need because lymphedema garments are not covered. Medicare spends billions of dollars every year, however, treating largely preventable lymphedema-related cellulitis.

Through the tireless efforts of a small group of lymphedema advocates, patients, and medical professionals, we have gotten a House bill—H.R. 4662, the Lymphedema Diagnosis and Treatment Cost Saving Act of 2010—introduced by Congressman Larry Kissell from North Carolina. Since its introduction support for H.R. 4662 has been steadily building momentum. As of August 15, 2010, the bill had 50 co-sponsors distributed between both parties and genders. The bill has also been endorsed by more than 40 organizations, including LiveSTRONG® (the Lance Armstrong Foundation), the Colon Cancer Alliance, Living Beyond Breast Cancer, the Breast Cancer Network of Strength, and the Susan G. Komen for the Cure® Advocacy Alliance.

Despite the broad support we have enjoyed, we still need help. We need people to write to their representatives and ask them to co-sponsor this bill and to write to their senators to ask them to sponsor a companion bill in the Senate. For more information about how you can help H.R. 4662, please visit www.lymphedematreatmentact.org. _

For more information about lymphedema and the Marilyn Westbrook Garment Fund, visit the National Lymphedema Network’s website at www.lymphnet.org.

News or Nonsense?

Health news can at times be misleading and confusing, but by thinking critically about media reports and understanding some basic principles behind research, you can be a savvy news consumer. By Barbara Boughton

Log on to your computer, turn on your TV or radio, or pick up a magazine or newspaper on any given day and chances are you’ll find multiple stories that focus on cancer treatment or prevention. Headlines that broadcast things like “Superfoods Fight Cancer!,” “Cut Your Cancer Risk Now,” or “Study Points to New Breast Cancer Risk” suck us in, often offering only quick tips and watered-down research. In cases where the articles are more in-depth, contradictory reports and complex scientific studies can leave those of us without a medical degree reeling. How can a wise consumer decipher what’s valuable and what’s nonsense when it comes to news about cancer?

Take Your Dose of Health News with a Grain of Salt

First, apply a healthy dose of skepticism to what you read and hear about health in the media and on the Internet. According to a 2010 report in the New England Journal of Medicine,1 a national survey of consumers from 2002 to 2008 shows that many of us are already doing this: we’re less trusting of news we find on the Internet than we used to be, and we are more likely to ask our physicians for help in understanding these news items.

Health news found in mainstream newspapers and magazines should be approached with equal caution. News may be published by journalists under pressure to grab attention with a sensational headline or by those who may not have the training to understand the scientific study they are writing about. This can lead to inaccurate reporting, says Steven Woloshin, MD, MS, professor of medicine at the Dartmouth Institute for Health Policy and Clinical Practice and co-author of Know Your Chances: Understanding Health Statistics (University of California Press, 2008). “Even if you read a very reputable newspaper, and they’re reporting on a study from a high-profile medical journal, it’s still important to approach these reports with healthy skepticism.”

It’s not only journalists who are generating inaccurate health news, says Dr. Woloshin. Scientists who believe passionately in what they do, or who want to advance their careers, may overstate the importance of their research findings when interviewed in news reports. And even news releases sent out by medical journals—which reporters sometimes rely on for information—may misstate or overstate the significance of the published research, Dr. Woloshin notes.

All these factors should lead consumers to think critically about the source of the news they read and the intention behind its publication, says Dr. Woloshin. “It doesn’t mean not to believe anything,” he says. “But it does mean to ask some questions and not assume that what you’re reading is true or important.”

Ask the Right Questions

Learning to ask several key questions when you hear the latest story or read a news headline can help you to interpret health news. Dr. Woloshin encourages consumers to ask, “Did the treatment or intervention have an effect on an actual health outcome that really matters to me, such as improving survival from cancer or quality of life during cancer treatment?”

Also important is to consider whether a treatment, diagnostic test, or health intervention might be harmful or costly, says Gary Schwitzer, publisher of HealthNewsReview.org, a nonprofit website that reviews media articles and ads about health issues. Other questions include whether the approach being studied is new and whether there are alternative options, Schwitzer says. Finally, consumers should note who is promoting a given health approach or treatment. For instance, news from an independent newspaper or magazine about the health effects of vitamins will probably be more reliable than a story from a website that sells these products.

“Unfortunately, many of the stories in the media we review fail to adequately quantify important factors such as the harms and the benefits of a given treatment, test, or intervention,” Schwitzer says. “Many times a story will make something look terrific, risk-free, and without a price tag, and nothing could be further from the truth.”

Beware the Numbers Game

In addition to approaching health news with skepticism and asking some key questions, consumers can help ensure a clear understanding of media and online reports by learning a bit about the statistics that are the focal point of many health news stories.

For instance, many news reports about scientific studies are likely to include statistics on relative risk. Relative risk is expressed when one group is compared with another—for instance, one group that has health screenings for cancer regularly versus another group that does not. A relative-risk statistic might be expressed as: “Women who have health screenings for cancer are 50 percent less likely to die of the disease than those who do not get screenings.” But getting this relative-risk number without an idea of the magnitude of the baseline risk, says Dr. Woloshin, is like knowing that a clothes item is on sale without knowing the original price.

Therefore it can be helpful to also have information about the absolute risk,which is how common the outcome is in each of the study groups. This information provides context and clarifies the potential impact on a population. For example, for very common diseases, even a fairly modest relative reduction in risk may have a significant impact on a population level. Unfortunately, many news reports—and the scientific studies on which they’re based—emphasize relative-risk statistics without clarifying the absolute risk. This practice, Dr. Woloshin says, has the effect of obscuring the real meaning of a new health finding and failing to put it into perspective.

Of Mice and Men

To understand the significance of a scientific study—whether it concerns a treatment or an intervention that might prevent cancer—it’s also important to note whether the research was done in the laboratory (on tissue or cells in a test tube) or on animals. The distinction is important because laboratory and animal research is considered preliminary; often health effects that are observed in a lab or an animal just don’t translate to humans. “Some people believe that mice are chosen for research because they reflect human beings when in fact a majority of treatments investigated in animal studies doesn’t go on to have proven benefits in humans,” says Barnett Kramer, MD, MPH, associate director for disease prevention at the National Institutes of Health.

Also important in understanding the significance of a research finding discussed in a news report is at least a basic grasp of the design of human clinical trials. When it comes to studies on humans, randomized clinical trials are considered the gold standard of scientific evidence. In this type of study, one group of patients is randomly assigned to receive a new treatment or intervention and another is assigned to either a standard treatment or an inactive, or placebo, treatment. Because treatments are assigned randomly (and not chosen by the patients, their doctors, or the researchers) and effects are often assessed and recorded carefully, these studies are the least likely to be biased, according to Dr. Kramer.

Treatments studied in human clinical trials go through three phases, with Phase I studies being the most preliminary and Phase III studies the most definitive. Phase I studies are generally small studies in which a drug is being tested for the first time in human beings. “The goals of these trials are really to look at the toxicity of a drug and to determine what dose should go into further testing,” says Jennifer Eng-Wong, MD, MPH, assistant professor of medical oncology at the Lombardi Comprehensive Cancer Center at Georgetown University Hospital. Phase II trials assess the efficacy and the safety of a treatment or combination of treatments for a specific cancer and are often not randomized. Phase III clinical trials usually compare a new treatment against the current standard treatment. “The goal is to see whether the new treatment is better than the standard—and to find out if it might change medical practice. It might be more effective than a standard treatment, or it might have similar efficacy but cause fewer side effects,” says Dr. Eng-Wong. Phase III clinical trials generally have hundreds or even thousands of patients, sometimes from many different medical centers around the world.

Studies are sometimes also classified as observational. Unlike clinical trials, observational studies don’t assign people to a particular treatment or health intervention. They simply observe and record factors that might influence health and look at outcomes that occur. Observational studies are considered less reliable than randomized clinical trials because they are more subject to bias (because the treatment or intervention isn’t random) and are more likely to be influenced by factors other than the intervention being studied, which are called confounders. Bias and confounding can, however, be minimized through careful study design and analysis, and responsible researchers and journalists will provide information about a study’s strengths and limitations.

An advantage of observational studies is that they can address research questions that may be impossible to address in a clinical trial. When assessing exposures such as alcohol intake, for example, it wouldn’t be ethical to assign people to the exposed group. But in an observational study, researchers can collect information about people who choose on their own to engage in a particular behavior. And even when an exposure or a treatment can be tested in a clinical trial, observational studies may lay important groundwork for the trial. Two common types of observational studies are cohort studies and case-control studies.

Put It All in Perspective

To gain perspective on health studies reported in the news and to understand the implications of reported studies, the best help is likely to come from your doctor because he or she knows your full health history and can help you interpret how significant a study is—particularly for you personally. “Your doctor can help you put health news into context and find out whether a given treatment might be appropriate for you,” says Jonathan Berek, MD, MMS, professor and director of the Women’s Cancer Center at the Stanford Comprehensive Cancer Center. For instance, a treatment studied in a clinical trial might not yet be approved by the US Food and Drug Administration or might not be appropriate for certain patients, he says. “It really is important for patients to review with their doctors news they see in the lay media or on the Internet—and not to take information they see in news reports as gospel,” Dr. Berek adds. _

False Promises

It’s important for consumers to be wary of news that is reported as being a “breakthrough” or a “cure” or even “promising” or “dramatic,” says Barnett Kramer, MD, MPH, associate director for disease prevention at the National Institutes of Health, because most scientific advances come about through small—rather than large—steps forward, each building on the work of previous research. “In general, breakthroughs are rare,” says Dr. Kramer. “Incremental advances are much more common. And sometimes what may appear to be a breakthrough or even an incremental advance is not because the evidence is preliminary.”

Use of Radiation to Treat Axillary Lymph Nodes Reduces Lymphedema Risk in Early Breast Cancer

For women with early-stage breast cancer and a positive sentinel lymph node, use of radiation—rather than surgery—to treat the axillary lymph nodes appears to be effective and to have a lower risk of lymphedema. These results were presented at the 2013 Annual Meeting of the American Society of Clinical Oncology (ASCO).

For women with early breast cancer, determining whether the cancer has spread to the axillary (under the arm) lymph nodes is an important part of cancer staging. Evaluation of the axillary nodes often involves a sentinel lymph node biopsy. The sentinel nodes are the first lymph nodes to which cancer is likely to spread. If the sentinel nodes contain cancer, women often undergo more extensive lymph node surgery (axillary lymph node dissection). A common side effect of axillary lymph node surgery is lymphedema of the arm—swelling of the arm due to an accumulation of lymph fluid.

To evaluate a different approach to treating the axillary lymph nodes, researchers in Europe conducted a Phase III clinical trial (the AMAROS trial). The study included 1,425 women with early-stage breast cancer and a positive sentinel lymph node (a sentinel lymph node that contained cancer). Women underwent additional lymph node treatment with either surgery or radiation therapy.

  • Five-year overall survival was 93.3% among women who underwent lymph node surgery and 92.5% among women who received radiation to the lymph nodes. Survival without a cancer recurrence was 86.9% with surgery and 82.7% with radiation. These differences between study groups did not meet the criteria for statistical significance, suggesting that they could have occurred by chance alone.
  • Lymphedema was less common among women in the radiation group. During the first year after treatment, lymphedema developed in 40% of the women who had lymph node surgery and 22% of women who had radiation to the lymph nodes. The frequency of lymphedema decreased during subsequent years, but continued to favor radiation: at five years, 28% of women in the surgery group and 14% of women in the radiation group had lymphedema.

This study suggests that radiation therapy to the lymph nodes may be an alternative to lymph node surgery for selected women with early-stage breast cancer. The two treatment approaches appear to have similar effectiveness, but radiation therapy may be less likely to cause lymphedema.

Reference:

Rutgers EJ, Donker M, Straver ME et al. Radiotherapy or surgery of the axilla after a positive sentinel node in breast cancer patients: final analysis of the EORTC AMAROS trial (10981/22023). Presented at the 49th Annual Meeting of the American Society of Clinical Oncology. May 31-June 4, 2013; Chicago, IL. Abstract LBA1001.

American Cancer Society,
www.cancer.org

American Association for
Cancer Research, www.aacr.org; click on “Survivors & Advocates” for information aimed at cancer survivors and consumers

American Society of Clinical Oncology, www.cancer.net

HealthNewsReview.org, www.healthnewsreview.org; independent expert review of medical stories in the media

National Cancer Institute, www.cancer.gov; click on “Physician Data Query (PDQ®)” in the lower-right corner under “Cancer Topics” for perspectives and new information about cancer treatments

Journal of the National Cancer Institute, “Tip Sheets for Reporting on Cancer,” www.oxfordjounals.org/our_journals/jnci/resource/reporting_on_cancer.html; although designed for journalists, these fact sheets provide useful information for understanding scientific studies

Books

Barbara Boughton and Michael Stefanek, PhD. Reduce Your Cancer Risk: Twelve Steps to a Healthier Life, ed. by Ted Gansler, MD (New York: Demos Health, 2010).

Steven Woloshin, MD, MS; Lisa M. Schwartz, MD, MS; and H. Gilbert Welch, MD, MPH. Know Your Chances: Understanding Health Statistics (Berkeley: University of California Press, 2008).

Schmitz KH, Agmed RL, Troxel A et al. Weight lifting in women with breast-cancer-related lymphedema. New England Journal of Medicine[early online publication]. August 13, 2009.

Shaw C, Mortimer P, Judd PA. A randomized controlled trial of weight reduction as a treatment for breast cancer-related lymphedema. Cancer. 2007;110:1868-74.

[1] Cormier JN, Askew RL, Mungovan KS, Xing Y, Ross MI, Armer JM. Lymphedema beyond breast cancer: A systematic review and meta-analysis of cancer-related secondary lymphedema. Cancer. [Early online publication]. July 27, 2010.

[1] Donker M, Rutgers EJT, van de Velde CJH, et al. Axillary lymph node dissection versus axillary radiotherapy: A detailed analysis of morbidity. Results from the EORTC 10981-22023 AMAROS trial. Presented at the 38th Congress of the European Society for Medical Oncology (ESMO), Amsterdam, Netherlands, September 27-October 1, 2013. Abstract LBA30.

[2] Ahmed RL, Thomas W, Yee D, Schmitz KH. Randomized Controlled Trial of Weight Training and Lymphedema in Breast Cancer Survivors. Journal of Clinical Oncology. 2006;24:2765-2772.

[3] Becker C, Assouad J, Riquet M et al. Postmastectomy Lymphedema: Long-Term Results Following Microsurgical Lymph Node Transplantation. Annals of Surgery. 2006;243:313-315.

[4] Bevilacqua JLB, Kattan MW, Yu C et al. Nomograms for predicting the risk of arm lymphedema after axillary dissection in breast cancer. Paper presented at: 2011 Breast Cancer Symposium; September 8-10, 2011; San Francisco, CA. Abstract 8.

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