We-survivors know the story. First you find the lump, then you go through surgery, irradiation, chemotherapy, depending on its kind. Once it is all finished, you hope that’s it, you can breathe again. As in some scary war movies where bombs are falling, shootings, screams, and then it’s all quiet again. Unfortunately, if lymph nodes have been removed or irradiated (because they might harbor some cancer cells) then lymphedema may raise its head, sometimes soon after surgery, but othertimes years later. There is no cure but it can be managed.
What is Lymphedema: The arteries bring blood, with oxygen and nutrients to the tissues, including the spaces between the cells (interstitial spaces). From there the fluid goes to veins that carry the waste away. There is excess fluid between the two, which collects in the “lymphatic” vessels. This fluid that filters out of the blood circulation contains proteins, but also cellular debris, bacteria, etc. Once inside the lumen of the lymphatic vessels, the fluid is guided along increasingly larger vessels to lymph nodes, which remove debris and police the fluid for dangerous microbes. The lymph ends its journey in the thoracic duct which drains into the blood circulation. If there is damage to the lymphatics, ie if some or all lymph nodes in the armpit have been removed surgically or irradiated because they may hide some cancer cells in them, then the lymph has nowhere to go and an abnormal amount of protein-rich fluid collects in the arm. Left untreated, this stagnant fluid causes tissue channels to increase in size and number, reducing oxygen availability. This interferes with wound healing and provides a rich culture medium for bacterial growth that can result in an infection (cellulitis). In roughly half the cases where the lymph nodes have been removed lymphedema may develop.
Cellulitis is caused by Group A Streptococci, but sometimes Staphylococcus Aureus. Both are bacteria, ie they can be killed by the right kind of antibiotics. They are normal inhabitants of healthy skin but the antibodies or other defences of the skin do not let them cause disease. Unless, of course, you have lymphedema…
Lymphedema by itself causes no pain, unless there is cellulitis, allergy or other irritation.
The swelling by itself may not matter much. I just made my shirt-sleeves wider. But, preventing an infection is very important. As you do not have much immunity on the arm with lymphedema, make sure you do not have blood taken from this arm, because the risk of infection is high. You could perhaps have blood taken from your foot but the risk for blood clots is greater and in many centers it is not offered. I have blood taken from my other (left) arm where lymphedema is mild, but I ask them to use minimal constriction or not at all. Thankfully, I do have a good vein on my left arm. Also, avoid constriction of all kinds, eg blood-pressure cuffs, even lying on your arm because it may make the swelling worse. To take blood pressure use the other arm, if it is not at risk for lymphedema too, or the leg. Note that normally the blood pressure on the leg is significantly higher than on the arm.
If it is left untreated, cellulitis can result in gangrene and amputation to avoid death(!), but also a delay in treatment will cause further damage to the lymphatic system and set up a vicious circle. To reduce the swelling, you may need compression bandaging, gloves and sleeves, special massage and exercises, also good skin care, to increase the skin’s natural defences. Also, avoid heat and the sun and wear compression sleeves if you fly in an airplane (see the Chapter “What is Lymphedema” in the BCAK website http://bcakingston.ca/lymphedema/what-is-lymphedema/). Sometimes the episodes are mild, starting from a tiny speck on the arm. A mosquito bite is enough to do it if you scratch it, or a tiny scrape eg as you are trying to put the compression sleeve on, but sometimes the compression itself may trigger it, as some peripheral lymphatics are very superficial. If you cut yourself very lightly, so that you don’t see any blood just some yellowish liquid, that’s the lymph (λέμφος in Greek).
If you detect signs of infection, ie redness, hot feeling on that spot, swelling, pain, fever, you have to go to the Emergency right away. It is best to always have some antibiotics with you (eg Cephalexin) to take ASAP. Depending on the Emergency doctors’ evaluation, you may be given oral or more likely intravenous antibiotics.
Early diagnosis of cellulitis is important. But if you get a dime-size red speck, should you run to the Emergency or not? What you can do is, mark the edge of the red with a pen and wait for half an hour or so. If it is cellulitis then the red will cross the line and get bigger. But the red may be a false alarm too, it may get paler and fade in the background. Not cellulitis!
If the red patch crosses the line, do not panic, because an allergic reaction too can cause redness of the skin that may spread and feel warm. How can you tell them apart?
Cellulitis is caused by a break in the skin. It causes frank pain as you press or move the muscle. Fever and chills are present too. Mine had started in the lower arm and moving my fingers hurt. The skin was swollen and red and I could see the red advance under my eyes. Scary! It spread to my upper arm, chest and back, looked like an irregular map… Thankfully, iv Ancef took care of it. After a few days the skin of my arm and trunk peeled, as if sunburned!
An allergic reaction on the other hand can be caused by eg something trapped in the fibers of the compression sleeve or glove (eg powder detergent, if not well rinsed), an insect bite or other substances you might be allergic to*. But, if it is an allergic reaction it is itchy and stings maybe on the surface, but there is no pain when you press it. If the allergy is severe, you may take antihistaminics but not antibiotics, save for prophylaxis.
As a general rule, if you get two bouts of cellulitis in a year, you may be given antibiotics prophylactically.
Oftentimes, diagnosing cellulitis can be hard. It can be confused with an allergy or even a sunburn. You may also have both, if eg you scratch a spot that was itchy because of an allergic reaction and you get nasty bacteria in. After wearing compression sleeves with a silicone band at the top (so that the sleeve does not slide downwards) for ~7 years, I developed an allergy to the latex that looked a lot like cellulitis. I had iv antibiotics and wore the sleeve inside-out to avoid the “friction”, or so I thought. But, several months later, when the red had disappeared completely, I wore the sleeve the right way again, ie with the silicone to my skin, and the red, itchy dots from the silicone band re-appeared quickly. I was allergic to the latex… Every case is bound to be different but it is best to be examined by an infectious diseases specialist who may be on call at most Emergency departments. I was lucky to get an excellent one: Dr Martinez at KGH told me that in cellulitis the red is painful and advances fast, usually with discrete borders and there is fever and chills too. After a while there is exfoliation, the skin peels off.
I had cellulitis requiring intravenous antibiotics twice. Going to Emerg in the middle of the night is no picnic. After the first time, my family doctor gave me a letter describing the situation, that I have lymphedema after breast cancer surgery and that I may have cellulitis ie it is not just a rash, to save time in diagnosis. The letter was very helpful and I am grateful to him for this! I was given Ancef, then Ancef plus Ceftriaxone antibiotics intravenously for 5 days, then oral Cephalexin for a month or so. Then Cephalexin prophylactically, half the therapeutic dose, ie 2 x 500mg. I have to say that the infection is gone – for now at least. I will keep taking it, especially during the summer when my arm swells with the heat and as the wraps hold it down, the danger of infection is increased.
If you have an infection do not use the compression sleeves and gloves till it is gone. Then you can put them back on and you can go back to swimming too to reduce the swelling. If there is any chance of an infection lurking though, do not have massage therapy, because it may just spread the bacteria around! Wait till it is healed completely.
In general, you have to be more careful with infections of the hand, because of the many nerves that may be damaged. There are other bacteria causing infections, but not the nasty cellulitis. If you just get a hang-nail, put some polysporin cream or hand sanitizer or 70% alcohol and cover with a band-aid. It may be caused by other bacteria, that do not cause life threatening cellulitis and may go away on its own. But if the red gets painful and starts to spread to the hand and you have a fever, then better go to Emergency.
The heat is the worst offender for me at least, it makes my arm swell worse than flying. I usually carry a small fan to meetings. If I cannot get away from the heat, I just dip my arm and hand with the sleeve in water, then squeeze out the excess. If there is a fan or air draft around I stand in front of it with my arm held high. Depending on how hot it is, I may just spray with water from a little spray bottle I carry. That way the skin does not get wet, which might facilitate infections, and I put some hand sanitizer on top to make sure. I change the sleeve once I get home.
Whenever I take the sleeve off I put “Lymphaderm” cream on, to increase the skin’s natural defences.
Of course, your doctor will decide what antibiotics to use, depending on the species of bacterium, possible allergies to antibiotics, severity and type of symptoms and other factors, but the following link is a consensus document on the management of cellulitis in lymphedema, from the British Lymphology Society, to give you an idea.
*A mosquito bite does not cause cellulitis infection usually, unless you scratch it. Polysporin cream with lidocaine helps prevent an infection with the antibiotics and reduces itchiness with the lidocaine which is a local anesthetic. Cover it with a Bandaid.
August 24, 2018.