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Risk Reduction in the News – Response from the NLN Medical Advisory Committee
2012 Conference featured in Oncology Times
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NLN Position Papers: Risk Reduction, Risk Reduction Summary, Diagnosis and Treatment, Exercise, Training, Breast Cancer-Related Lymphedema, Supplement BC-Related LE
Q: About a year ago, I had uterine cancer with surgery and radiation therapy to my pelvis. I had an episode of infection/cellulitis and after that, I noticed some swelling and fullness on the right side of my genital area. Now the skin texture is thicker and I have warty-type growths that are appearing on the labia. What should I do?
A: With your history of pelvic surgery and radiation therapy, the labial swelling could be a symptom of genital lymphedema. The risk for lymphedema increases with a combination of surgery, radiation and history of recurrent episodes of infection. Genital lymphedema can present in different ways. In females, the labia minora and labia majora may swell, and papillomas, or warty growths you describe are often symptoms.
Other conditions, such as cardiac or venous problems, liver or renal diseases, and active malignancy can also cause genital edema, so it is important that your primary care practitioner perform a thorough evaluation. If your primary care practitioner is not trained in lymphedema management, you could ask for a referral to a trained practitioner.
If, after the evaluation, the condition is determined to be lymphedema, treatment involves combined decongestive therapy, manual lymph drainage and compressive bandaging. If the swelling is associated with lower extremity lymphedema, the treatment of the genital swelling should precede the treatment for the leg LE. Bandaging for genital lymphedema can be tricky, with padding used to apply pressure to the labial and lower abdominal areas. Some bandaging companies are providing some spot compression garments, and custom made items. (See the Resource List: "When one size does not fit all"; LymphLink April/June 2007).
It is important that you meet with a Certified Lymph-edema Therapist who is trained in treating genital lymphedema.
Q: I have been treated for bladder cancer and lately, I have been noticing fullness in my genital area and lower abdomen. I am embarrassed to admit I am also leaking fluid that has a bad odor, but I don't think it is from my bladder.
A: Your history and description of A: symptoms could indicate genital/ gynecologic LE. Clear labial/vaginal discharge (called lymphorrhea) can be a symptom of lymphedema. Lymph fluid does not have an odor, but has a high protein content, which provides an excellent growing medium for bacteria, which could cause the odor.
According to Dr. Andrea Cheville, ".Treatments for bladder, colon, and renal cancer have potential to compromise the deep lymphatic structures, increasing the risk of gynecologic LE. For patients with this history, if they have any genital swelling; changes in the skin texture; changes in hair growth; thickening of the labia; the presence of papillomas or discreet warty growths; or lymphorrhea, which is leakage of serous fluid through compromised or intact skin, think lymphedema"; (OB/GYN News, Kate Johnson, August 1, 2003).
As always, it is important to share changes in your symptoms with your primary care practitioner to rule out other causes for the symptoms.
Q: I have recently developed lower extremity and genital lymphedema. It has been 5 years since my cancer and subsequent treatment. I have not been able to find much information regarding this. Can you help me?
A: Your question and observation of the lack of research and literature regarding genital and lower extremity lymphedema is, unfortunately, very accurate.
A recent article by Suzy Lockwood- Rayermann PhD, RN, in Cancer Nursing verifies the lack of research in lower extremity lymphedema. She identifies that research and strategies identified for upper extremity lymphedema cannot generally be applied to lower extremity and genital lymphedemas.
The incidence of genital lymphedema is not really known. It often goes undiagnosed, but is estimated in the literature to occur following oncological surgery in 10%-20% of females, while the incidence in males following oncological surgery appears to be even higher. Genital lymphedema most commonly occurs in the first 3-4 years after cancer treatment, but patients are at risk for developing lymphedema the rest of their lives.
As our main article and case studies demonstrate, gynecological lymphedema is a very real issue that deserves research and publication to assist therapists, practitioners and patients to be better equipped in dealing with the symptoms.
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 1, May 1, Aug 1, Nov 1.
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