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Risk Reduction in the News – Response from the NLN Medical Advisory Committee
2012 Conference featured in Oncology Times
Clinical Trials - Patient Participation
NLN Position Papers: Risk Reduction, Risk Reduction Summary, Diagnosis and Treatment, Exercise, Training, Breast Cancer-Related Lymphedema, Supplement BC-Related LE
Q: What is lipedema?
A: Many believe lipedema is an abnormal accumulation and storage of fat in the tissues. Why it occurs is not understood. Lipedema occurs predominantly in women, often occurring or increasing in severity at puberty, pregnancy and peri-menopause. Usually, it runs in families and occurs in the legs, but occasionally, it appears in the arms, as well.
There are some classical signs of this condition which include a "wall" or "bracelet effect" at the ankle. Usually, the foot is not involved unless LE develops, which often happens after a number of years if the lipedema is left untreated. The legs, which typically look like mirror images of each other, are often tender and bruise easily. They may look like columns (i.e., there does not seem to be much definition in their shape). The classical picture of a woman with lipedema is one who looks like a size 8 above the waist and size 16 below the waist-top half and bottom half of body don't seem to match.
Q: Recently, I started seeing a new massage therapist who has been trained in Manual Lymph Drainage (MLD). She told me I possibly had the condition called lipedema. As she was describing the signs (both my legs are heavy and equally so; there's a "bracelet" effect at my ankles and my feet are not swollen; my legs are extremely tender and I bruise easily), I nearly cried as she was describing me exactly. How can I find a physician who knows about this condition?
A: Athough first described in the '40s at the Mayo Clinic by Allen and Hines, little is known about lipedema in this country. There is a limited number of doctors in the U.S. and Canada who truly know about this condition, unlike Europe, where it is a commonly known and diagnosed condition. Physicians and therapists who are LANA certified are familiar with lipedema. Check the resource guide at www.lymphnet.org and www.clt-lana. org for a physician/therapist in your area. There are a few articles listed under lipedema on www.google.com that you could print out to take to your physician.
Q: Is there anything that can be one for lipedema?
A: Since little is known about the cause of lipedema, the best answer is "it depends." Now, let me explain. If you mean: can lipedema receive therapy that will help reduce the pain and possibly the size of the legs? Then yes. Manual Lymphatic Drainage (MLD) has been found to be effective in managing this condition.
If you mean: is there a cure? Then sadly, the answer is no. Because the cause is not known, a cure is not possible. However, with Complete Decongestive Therapy (CDT), the symptoms can be well managed. Following CDT treatment, compression stockings can help control the condition by preventing the dependent edema that occurs in the legs during the day. However, the number of fat cells will not be reduced.
Diet has not been found to be particularly effective in managing lipedema. Many have found it extremely difficult to lose weight and have battled their weight for years. Recent research suggests that diets that reduce inflammation might be beneficial. The thought behind this is that fat produces inflammation in the body; therefore, a way of eating that helps to reduce inflammation might help with lipedema. Stay tuned for future developments in this new light on the condition.
Q: Since lipedema has fat deposits, would liposuction benefit someone who has lipedema?
A: This is a controversial subject. It would appeal to one's sense of logic that if the trouble is an extra amount of fat deposited under the skin, then liposuction should help. Here's part of the reason this may be a faulty belief: the amount of fat that would have to be removed to make a sizeable difference in the look of the legs would be too great for the body and death could occur.
According to the website, www.liposuc tion.com, Standards of Safety dictate ".the maximum amount of fat that can be removed safely is probably about 6 to 8 pounds.
"Whenever large volume liposuction has been used to attempt to treat obesity by surgery, there has been a significant increase in the incidence of serious surgical complications. [In other words, it] can be fatal. [Since] it is not safe to remove huge amounts of fat by liposuction...[it] will not be of any significant benefit for an obese patient who believes liposuction will aid in the effort to lose weight. Liposuction is not a good treatment of obesity. Liposuction is not effective, even as a last resort, for people who are unable to lose weight by dieting and exercise."
Some plastic surgeons do think the newer tumescent wand could cause less damage to the lymphatic system and be less harmful. Perhaps, some sculpting can be done after there has been weight reduction, but it should never be used instead of weight reduction.
Please address questions to: Editor c/o NLN, 116 New Montgomery Street, Suite 235, San Francisco, CA 94105 or e-mail: nln@lymphnet.org. Deadlines for submissions (for the following issue) are: Feb 15, May 15, Aug 15, Nov 15.
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