Lymphedema: The Lemonade of My Life

Design and Development Coordinator
National Lymphedema Network

By Robin Miller

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.”

Resources for More Information

Online

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).