Q: I am a redhead and always have had many freckles all over my body, as well as very dry, sensitive skin. I developed LE one week after my BC surgery, and was fortunate to be close to a LE treatment center. Two days into my treatment, after the bandages were removed, my arm was very red and sensitive. The therapist told me this is not unusual and suggested additional padding, i.e.: artiflex & foam. After five days, my arm was almost normal and she measured me for a custom sleeve. This is when the real problems started. My arm became very sensitive and I developed a painful rash. I panicked since I could not do my self-MLD anymore. My skin is still very sensitive, and some of the swelling has returned. What to do now?
A: Many patients have sensitive skin and it is very important to address this in the early stages. You actually may be allergic to the fabric of the sleeve, or it may not fit properly. During the intensive therapy, it is important for the therapist and, of course, you to watch the skin closely and see what works and what does not work. There are various products (including lotions) that can cause symptoms like you describe. Some patients are allergic to compression sleeves and, especially, develop irritation in the inner elbow area. Some suggestions are: 1) a silky lining for this area and a soft band around the wrist/ upper arm; 2) avoid using glue as it can be irritating; 3) Juzo has a sleeve, "softin," specially designed for sensitive or problem skin; and 4) avoid applyinglotion/perfumes to the area before you put on the sleeve. It may be helpful for you to try a sleeve made with cotton-covered yarn such as the Elvarex sleeve by Beiersdorf-Jobst.
Q: I live in a remote area, and am not in a financial position to travel many miles for treatment. Do you have any suggestions for me?
A: My first recommendation is to obtain as much information and literature as possible from your doctor, Reach to Recovery, and the NLN, i.e., educate yourself. Secondly, there is an excellent video, specially designed for patients/therapists who do not have access to a LE specialist. "Self Care for Post-Mastectomy Lymphedema," is a step-by-step maintenance and prevention program (also available for lower extremities). This video will teach you about the basic lymphatic system: how to do your own care, such as self-MLD, bandaging, exercise and proper breathing; and how a spouse or loved one can participate in your self-care program, as well. Some LE activists have raised funds to send a therapist in their area to a training program, and have convinced their doctors to set up a treatment center either in the hospital or off-site. Also, NLN members are invited to submit a free PenPal/NetPal ad to correspond with others in a similar situation. Start a local LE support group by placing a short advertisement in your local newspaper. You might find that, in no time, your phone will be ringing off the hook and you will not feel so isolated anymore.
Q: I had BC four years ago, with a lumpectomy and axillary node dissection. I carefully follow the 18 Steps to Prevention and have not developed LE. Recently, I started doing yoga and have questions about whether certain poses or positions will put too much stress on my at-risk arm and underarm. In particular, the "downward dog" and the shoulder stand are of concern, and no one seems to know whether they could trigger the onset of lymphedema. Many thanks for your help.
A: Most yoga exercises are done slowly and should not stress your arm. However, you probably should avoid the shoulder stand, which is a pity, but possibly unavoidable. The "downward dog" position should not harm your arm unless you feel that it is putting excessive strain on your arm/shoulder. However, I think this will not be the case if done correctly. Well done for being careful and following the 18 Steps to Prevention!
Q: I have had BC in both breasts - mastectomy on one side, lumpectomy on the other - with axillary node dissection in both cases (17 nodes removed in one and 19 in other). Because of this, I have asked that physicians use my legs for injections and the taking of my blood pressure. I have encountered resistance to this request, although they have complied. In addition, I have found a laboratory that will use my legs for venipuncture. Again, this usually elicits much debate. I wear a Medic Alert bracelet which lists these conditions, but I believe, in an emergency medical situation, the warnings would be largely ignored. You mentioned a diagnostic procedure called Lymphangioscintigraphy in your January-March 1999 issue; my question is: Where can I have this procedure done and if this test shows normal drainage capacity, need I still be adamant in the use of my legs for medical procedures?
A: You have done well to convince physicians so far of the need to use your legs for venipuncture. However, in a life-threatening situation (e.g., bad car accident), I doubt whether much notice would be taken of the bracelet as it may not be possible to avoid and to save your life at the same time. A lymphangioscintigraph could be done (see Diagnostic Centers listed in the Resource Guide at the back of this newsletter), but I feel that with the number of nodes you have had removed, you are at considerable risk anyway; the diagnostic results would probably show a latent stage of lymphedema, i.e., not clinically detectable. On the other hand, if this latent stage did not show, it means the risk of onset of lymphedema is very much reduced. You should be warned that these tests are quite expensive, but may be worthwhile hopefully to put your mind at rest. I would stress that it is much safer in your case to only allow the use of your legs for medical procedures.
A1: I was on the internet, visiting the NLN Website and came across an "In Your Opinion" question regarding blisters on the labia. Here is what I do for my seven-year-old daughter when she gets these: I use liquid bioflavanoids on the affected area which helps it heal faster (she is also taking bioflavanoids orally). I have her use panty liners to help with extra compression since a foam pad is just too much for a little girl. The daily oral bioflavanoids seem to help reduce infection, incidence of blisters and help the area heal more quickly.
A2: Here is a suggestion for the computer programmer with lower extremity lymphedema who needs a chair that will let him keep his leg elevated while he works: One thing that he could try is the split keyboard on the arms of an office chair that reclines somewhat. He can then put his leg up on the desk (preferably with the surface padded). With the keyboard attached to the chair arms so it is right at his hands, he does not have to lean forward to a desk in order to do his computer programming work. Instead, he can lean back and have his leg elevated while working. The split keyboard can take a bit of getting used to, but it is also helpful in preventing another hazard of long hours at the computer: rounded shoulders and forward head posture, both of which can lead to neck and upper back problems. Hope this helps.
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