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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: I have read in your prevention section that people with LE (lymphedema) should wear a compression sleeve when traveling by air. I am confused as to whether this applies for prevention purposes, or if there are other precautions one must take when traveling by air to avoid developing LE. All of the people I know who have had lymph nodes removed say they have flown without any special measures with no problem.
A: Overall, there seems to be some controversy around this issue. Even today we do not understand why some patients develop LE and others do not. But we do know that a large number of patients develop LE as a result of lack of education.
My feeling is that whatever we can do that might possibly help prevent the development of LE, it's a plus. I strongly advise patients who have LE to add a second sleeve or bandage the arm, including the hand, and for the patient who is at risk, to wear a sleeve/glove when flying. Be sure it fits correctly (maybe by wearing it a short period of time for a day or two prior to the flight to test it) since there are patients who developed LE from wearing a poorly fitted sleeve while flying.
On a positive note: I see a number of patients who are flight attendants with LE. They wear their sleeves religiously and their arms have not changed or caused them any trouble.Q: I have had LE in my right arm since 1984 and recently was diagnosed with a recurrent cancer in my left breast. I had 14 lymph nodes removed; two were positive. Not only am I confused, but extremely concerned since your literature clearly indicates that one should never have an injection, blood draw, or have a blood pressure taken in an arm where lymph nodes have been removed in the area. My doctor tells me this is nonsense and not to listen to your organization since you are frightening patients.
A: Obviously your doctor, like many others, has little knowledge or interest in LE which continues to remind me of the purpose of the NLNŽ: to educate the medical community and make them aware of the urgency of pre- and post-operative measures. In your case, you should never allow invasive procedures in either arm unless it is an emergency. Blood pressure can be taken from a leg. In-patients should have a Groshong catheter installed (IV tube placed in large shoulder vein that extends outside the body and can be used to take blood/give IV medications). Outpatients, of course, can have injections given in either buttocks or the upper thigh. Despite the pain, blood can also be drawn from the ankle or foot (be sure to ask for a topical or localized anesthetic to minimize discomfort). Also, since you already have LE in your right arm, you are more than likely susceptible to developing the condition. Please note that we do not, as of yet, have comprehensive literature to support this issue, but it is clear that large numbers of patients have developed a sudden onset of LE after disrupting already damaged lymphatics.
Q: I developed upper extremity LE one year ago and was lucky to find a treatment center close to my home. Not only was I treated with CDP, but I also was educated and guided into a home self-care program. I do daily self-manual lymph drainage, bandage three nights/week, and do my exercises with the bandages on. My job is computer data operation and I am concerned since I have noticed some slight changes in the arm. Are there any specific guidelines for LE patients who are office workers?
A: I'm glad you asked this question since a large percentage of women with LE work with a computer. Unfortunately, there are no concrete answers since all patients respond differently.
Some important preventive guidelines to consider are:
Many patients have no problem doing computer work, but for those who do, a job description modification may be required. You may need to shorten the amount of time you spend at the keyboard each day, or take on different tasks, transferring some of the keyboard work to others. When doing routine office procedures, such as opening the mail, be sure to take precautions against paper cuts (wearing a protective glove that covers your fingers is helpful). Most importantly: Be good to your body, avoiding as much stress build-up as possible, and do your daily self-care.
Q: I am interested in learning more about treating infants six months of age or younger. I am looking for input regarding materials used for compression with special attention give to the needs of infants, which includes not restricting movement, the ability to adjust the compression for infant's small and more fragile body, etc. Also, I am interested in guidelines for when to start using compression bandages and garments, and if the compression is different from what you would use with an older child. I hope to hear from everyone who has experience treating infants. (Jane Reinsch, MA, PT)
A: Treating and understanding patients under six months of age is very difficult. I have treated a number of infants and found them to be a great challenge. It is very important that you work closely with the pediatrician and make sure that you have an excellent understanding of the patient's medical history (besides the lymphedema). Parent compliance is crucial in the case of infant care; their interest and involvement in treating the child daily is key.
There are mixed philosophies regarding how best to treat infants: some clinicians say you need to wait until the child is four or five years old. Others, like myself, believe that if the child is healthy, go ahead and start the CDP. At this young age, however, it is not advisable to do the lymphoscintigraphy - even though we do not necessarily know how much of the patient's body is involved - since it sometimes shows up in one limb initially, but may progress over the years as the child develops. This is also what makes it difficult to treat infants.
Manual lymph drainage should not do any harm if performed properly and with a little lighter touch. Massaging the baby and teaching the parents how to do the basic movements can also create a lifetime bond that can be very healing and supportive for both the child and the parents (there are studies to support this).
Light bandaging or use of a customized Reid sleeve is beneficial as well. A custom garment (Jobst, Barton-Carey) also works and, of course, helps to protect the skin from trauma. IMPORTANT: Make sure that the parents clearly understand the concept of CDP and that they take the child in for regular visits with the therapist or pediatrician.
Note: This, of course, is my own opinion. I invite other clinicians to respond to this question and to share your experience with infants.
Q: I have recently developed lymphedema in my right arm secondary to breast cancer surgery with radiation. My question is, I wear acrylic nails and have worn them for years. Is this contraindicated for patients with lymphedema in the arm?
A: After doing a little research regarding current acrylic nail trends, it appears that under the care of a well-trained beautician, today's acrylic nails in general pose no threat to a lymphedemic arm. However, it is recommended that women who continue to be plagued with sudden onsets of lymphangitis (infection) DO NOT wear acrylic nails. If you do not have problems with recurrent infection, there are still a couple of things you'll want to watch out for.
First, there are apparently two basic types of acrylic nails: the regular acrylic and the "natural french" nails which are also referred to as "white and pink." From what we've heard, the natural french nails tend to be a little sturdier. This may be a plus for women with lymphedema of the arm because a strong, well-fitted nail will be less likely to loosen and pull up. When the acrylic separates from the actual nail, it leaves a small space that could invite fungal infection under or around the nail.
If you wear acrylic nails, be sure to: dry your hands and nails well after washing, wear gloves when washing dishes, and get regular touch-ups in order to avoid nail breakdown. It's also important that you educate your beautician about lymphedema so that s/he will be extra careful. One final thing: Acrylic nails have been known to make great weapons for personal self-defense, but be careful not to accidently use them against yourself. Especially if you don't have a lot of experience wearing them, be very careful not to break the skin with your nails when scratching an itch on your affected arm.
Attention Clinicians: The following challenging question is in need of an answer. What is your opinion? Please send, fax or e-mail your input to: NLNŽ, 2211 Post St., Suite 404, San Francisco, CA 94115-3427. Fax: 415-921-4284. E-mail: nln@lymphnet.org.
Q: I have secondary LE, left leg, as a result of cancer surgery and radiation. Every few months I have a blood test (CA125), a cancer detector test. The results of this test fluctuate and causes great concern when the count increases. My question is: could this fluctuation be due to the LE? My doctor asked the question but has no facts to refer to. I would be interested in knowing if any research has been done and if anyone else is experiencing this situation. Thank you for your help!
Please address questions to: Editor c/o NLN, 116 New Montgomery Street, Suite 235, San Francisco, CA 94105 or e-mail: nln@lymphnet.org. Deadline for submissions is first day of the month prior to publication.
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