Chafing and blisters are possible problems of a poorly-fitted compression garment or poorly-applied bandages. Remove the offending compression as soon as you notice any irritation, and talk to your therapist about ways to remedy the situation.

Allergic reactions are possible to materials or dyes used in compression garments, or to applications of products such as It-Stays to hold the top of a compression garment in place. Garments are available in a number of different fabrics to address this problem. An experienced therapist or fitter should be able to help you find one that works for you. In extreme cases, cotton stockinette can be worn under the compression garment. A garment-donning aid like a Jobst Easy-Slide or a Juzo Slippee can ease the problem of applying stockinette and a compression sleeve without creases or wrinkles that can further irritate the skin.

Any new skin lesions should be checked out by a dermatologist or your oncologist to rule out cancer spread to the skin.

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CARDIO-PULMONARY PROBLEMS

When we've been treated for breast cancer, shortness of breath raises red flags about possible heart or lung damage from chemotherapy or radiation. Lymphedema treatment (compression bandaging and Manual Lymph Drainage) is designed to move lymph fluid efficiently out of the swollen tissues and back into circulation. If there has been damage to the heart or lungs, this dumping of fluid back into the blood stream can cause congestion in the heart or around the lungs that will show up as difficulty breathing. If you experience shortness of breath following lymphedema treatment, stop at once and see your doctor to discover the cause of the problem before proceeding.

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STANDING UP TO MEDICAL PERSONNEL

After all the indignities of breast cancer treatment, it can be hard to remember that your body still belongs to you. But it does: this is your arm, and lymphedema is for the rest of your life. Once you have educated yourself about the risks involved with lymphedema, the choices you make about protecting yourself from developing or worsening lymphedema are yours alone to make. When dealing with medical personnel, you may meet with objections to those choices, or eye-rolling, or an attempt to belittle your concerns. Remind yourself that their momentary irritation is nothing compared to the "swell" life-long battle that may lie ahead if you give in to risky practices. Should lymphedema develop or worsen, they will not be there to help you – so don't allow them be the cause of it.

BE PREPARED

In emergencies it may help if you are wearing medic-alert identification. Carrying with you a brief medical history that outlines your diagnoses, treatments, current medications, allergies, and specific instructions for lymphedema-related precautions may also prove useful.

When you have time to plan ahead for an invasive treatment, test or surgery, make sure you discuss your concerns with your doctor beforehand. Your doctor's instructions to leave your affected arm(s) alone should be written into the orders for the procedure.

BE CALM BUT FIRM

If any of your doctors show little understanding of your concerns, help them along with written material such as the "What We Want Healthcare Providers to Know" pages from this website. Suggest to your doctors that they consult with your lymphedema therapist, if you have one.

BE CLEAR

Even when a medical procedure is planned in advance and your doctor has acknowledged your concerns, labeling your arm yourself adds a further layer of protection and allows for greater peace of mind. Using a permanent marker (it comes off later with alcohol), you can write on your arm in all the places likely to be used for IVs or a blood pressure cuff. For instance, you can write "No BP here" on your upper arm and "No IV here" in the crook of your elbow and the back of your hand. Write "Restricted Extremity" along the length of your arm, a phrase that alerts medical personnel to leave that arm completely alone. If your doctor is willing, have her or him sign your arm for good measure.

For procedures that involve being unconscious, even briefly, make an effort to talk with the anesthesiologist and someone from the recovery area beforehand, so you can be certain they'll be aware of your needs even when you're not able to express them. Hand-outs can be helpful for all the medical personnel you meet along the way.

BE GRACIOUS

Lymphedema is a complication for healthcare providers as well as for patients. When healthcare providers take the extra steps to protect you, thanking them can make their day brighter and help assure the positive experience will be repeated. Besides a simple, in-person expression of your thanks, consider writing a note of appreciation to the unit supervisor or the hospital's Patient Relations department. If you can remember the specific names of helpful individuals, they'll be pleasantly surprised to receive word of your satisfaction from their employers.

IF YOUR LYMPHEDEMA RISK IS BILATERAL: ALTERNATIVES TO USING YOUR ARMS

If you have had bilateral surgeries for breast cancer (even if one or both were prophylactic) both arms and both sides of your chest are at risk for lymphedema. You may choose to have blood pressures taken on your thigh or calf, injections done in your thigh or hip, blood tests in your foot, and IVs placed in your foot or neck. To do these things successfully, some extra preparation may be necessary.

The first step is to get it in writing. On the order sheet for a blood test, your doctor should write, "Draw from foot only," and in the surgery or test orders, "No IV, either arm." It may be up to you to assure that the person placing the IV is adequately trained and experienced to do it in an alternative location. When scheduling tests requiring IVs, call ahead to make sure an experienced professional will be available. For surgical procedures, arrange beforehand for the anesthesiologist to do it.

Both blood draws and IV insertion in your foot will be easier if your foot is warm. You can wrap a hot water bottle or microwavable heating pad around your foot on the way to the lab, being careful not to burn the skin. Staying well hydrated for the day or two before can help too. Another strategy for success – but harder to pull off – is to relax. Asking to be allowed to lie down for blood draws can make relaxation easier.

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GUIDELINES FOR SURGERY ON AN ARM, SHOULDER, HAND OR BREAST WITH LYMPHEDEMA

Unfortunately, arms and chests with lymphedema (or at risk for lymphedema) are not immune to other disasters. Breast cancer treatment itself seems to raise the risk of functional problems like carpal tunnel, tendonitis, tennis elbow, and rotator cuff injuries. Reconstruction surgery may need to be completed even in the presence of breast or chest lymphedema. Injuries from falls and accidents can happen too, and may require surgical intervention.

As a general rule, it only makes good sense to exhaust all the possibilities for non-invasive treatments before resorting to surgery in any area with lymphedema or at risk for it. But when surgery becomes necessary, the following guidelines can help you sail through your surgery and recovery with as few complications as possible, and return your arm and chest to manageable proportions promptly.

1. Make sure all doctors who treat you are aware that you have lymphedema, and review with them the problems and precautions involved. Don't assume they know how to properly protect you: be specific about your needs and concerns.

2. Consider requesting that your doctor and lymphedema therapist consult about ways to control new swelling before, during, and following surgery.

3. Make sure all necessary accommodations are worked out with your doctor before the surgery date. These include avoiding blood pressure, blood draws, IVs or injections in the affected arm. If both arms are involved or at risk, legs and feet can be used for these purposes instead.

4. If tourniquets will be used (for example, with carpal tunnel surgery), discuss the possibility of reducing tourniquet time to a minimum to limit the impact on the compromised lymphatics.

5. Because the presence of excess lymph fluid in the tissues increases the risk of infection, discuss the use of oral antibiotics the day of the surgery and continuing for several days afterward.

6. See your lymphedema therapist in the days before surgery for baseline measurements and for help in reducing any swelling to a minimum. Take extra precautions on your own as well during that time (extra self-massage, wrapping rather than wearing garments, attention to skin care) to be sure that your arm or chest is as free of excess lymph fluid as possible.

7. Arrange with your doctor about how soon compression bandages can be applied following surgery. The best arrangement is to have a trained family member or lymphedema therapist apply compression wraps over the surgical dressing immediately following surgery in the recovery room, and daily following dressing changes. A night garment with a zipper for easy application can be used instead, and is easier to manage in a hospital setting.

8. Following surgery, monitor your arm carefully (or have a loved one monitor it) in the following ways:

• Let your doctor or hospital staff know at once about any unexpected or unusual pain or swelling. If it does not resolve promptly, insist on appropriate testing for Deep Vein Thrombosis (blood clot formation).
• Redness, warmth to the touch, fever or undue swelling may indicate cellulites (infection). Let your doctor know immediately if it continues or spreads.
• Return to your therapist for help in monitoring the post-surgical swelling, and consider some professional Manual Lymph Drainage (massage) or even a repeat of your initial Complete Decongestive Therapy if necessary

With the cooperation of your medical team and your own alert self-care, you can look forward to a smooth recovery and a quick return to health and lymphedema control.

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Page Last Modified 09/29/2015

All medical information presented on this page is the opinion of
our Editorial Board and Experts.  See our "About us"  and "Resources" pages.