What is Lymphedema?
For most of us-breast cancer survivors the story is shared: First you find the lump that can kill, then depending on its kind you go through surgery, radiation, chemotherapy, hormonal therapy or targeted therapies (Herceptin or others). Once it is all finished, you hope that’s it, you can breathe again. As in some war movies where bombs are falling, shootings, screams to make your blood curdle, and then it’s all quiet again. Unfortunately, if lymph nodes have been removed or irradiated because they might hide some cancer cells, then lymphedema may raise its head, sometimes soon after surgery, but at other times, years later. There is no “cure” but it can be managed.
Several books have been written on lymphedema, and they are available at BCAK. They are listed at the bottom and you can borrow them for free.
What is Lymphedema: The arteries bring blood, with oxygen and nutrients to the tissues, ending in 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, and other pathogens. Once inside the lumen (hollow inside) 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 located in the middle of the body, 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 dilate, ie 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 breast cancer cases where lymph nodes have been removed lymphedema may develop, to different degrees.
Infections: Living with lymphedema has a special challenge that is not immediately visible: The swelling by itself may not matter much, I just made my shirt-sleeves wider. But, the defects in immune response of the arm make the arm extremely sensitive to infection. A mosquito bite, or a tiny scrape eg as you are trying to put the compression sleeve on, even the compression itself may be enough to trigger an infection (cellulitis). If it is left untreated, cellulitis can result in gangrene and amputation (!), but even a delay in treatment will cause further damage to the lymphatic system and set up a vicious circle. Sometimes the episodes are mild, starting from a tiny speck on the arm, but they can become life-threatening.
Once lymphedema sets in it almost never goes away completely, but it can be managed to the point that it does not interfere much with life activities. But, first it must be diagnosed:
Diagnosis: Usually doctors keep an eye for lymphedema if lymph nodes in the armpit have been removed, either just a sentinel node or all of them. The main sign is swelling, so the circumference of the arm is measured with tape and the numbers compared for both arms. The dominant arm is naturally slightly bigger, say on the bicep 27 vs 26 cm. Most often lymphedema shows up at the dominant arm, the one you use and need more – unfortunately – but most often the arm where lymph nodes were removed. An increase in size indicates lymphedema and it can happen within a few days after surgery, but also years, even decades later. For this reason, keeping an eye at prevention is important, to avoid later hassles.
The swelling may start at the hand. Look at the back of your hand, to see if your tendons are less visible than usual, and you know that best. Compare the two hands. Then measure your arm at several spots and compare. I found two spots on my arm where I have tiny specks like birthmarks and I measure there every time to keep track. You can use a tape measure like the ones used by seamstresses, or some special ones. I like a kind where one end is held in place, because then you can do the measuring with one hand.
How to avoid lymphedema: Depending on your situation, that is your particular lymphatic system (it varies a lot among people and treatments ie nodes removed), you may be able to keep lymphedema at bay. For this, several measures can help a lot:
Do not lift weights with the affected arm(s), ie the arm where lymph nodes have been removed. I do not carry a purse anymore, just a backpack, and I always wear both straps. Avoid heat, eg doing dishes in hot water, and hot baths or saunas are a no-no. Avoid sunburn. Depending on skin tone, skin creams may not be enough, so wear long sleeves. Avoid anything that may cause inflammation or irritation or infection, ie cuts, scrapes, mosquito bites, flea bites, dog bites, cat scratches etc. Avoid anything that restricts the flow of lymph, eg a watch, tight wrist bands on sleeves (not the fashion anymore, but still…). Keep your arm high as much as possible. Carrying a suitcase or duffel bag by the handle as you travel is out! If you fly, put compression sleeves and gloves on the arm(s) at risk. You can get some relatively cheap ones off-the-shelf ie not custom made.
The danger may go down as years pass, but according to Dr Marisa Weiss, MD, chief medical officer of Breastcancer.org, “The reality is that once you have lymphedema, it has to be seen as a chronic problem. Even if the arm goes back to feeling and looking normal, it needs to remain an ongoing concern.”
If you do get lymphedema: You can keep it under control, using several approaches, including compression, exercises and massage.
Compression: It is the most important part of the treatment. However, the pressure must be as uniform as possible ie avoid “welts”. Some of the lymphatics are very superficial and easily injured, for this reason compression must be applied carefully, to avoid infections.
The earlier the compression is applied, the better it is. Once hard, fibrotic lumps have formed it is harder to break them up.
The compression must always be highest at the hand and lower part of arm, then progressively reduced towards the armpit, to keep the lymph moving out of the arm and towards the heart. If you are lucky and have mild lymphedema (“stage 0” or “stage 1”), a compression sleeve and glove may be all you need. For stage 2 and stage 3 lymphedema however, things are different. You may need a “complete decongestive therapy” (CDT) ie massage therapy, exercises and compression to reduce the volume. Your arm diameter will be reduced rather quickly, so that the compression has to adapt constantly. That is, the size of a compression sleeve would need to be changed every day or almost, which is not possible. For this reason bandaging is recommended for several months depending on the severity of lymphedema. It is complicated and time-consuming. “Comprilan”, short-stretch bandages of various widths, ~2cm for the hand, ~9cm higher towards the armpit are usually used. I had to use 7 different types, 5 meters long each… This is a pain, to say the least. It takes almost an hour at first, less after you get the hang of it. You may hardly be able to bend your elbow to eat or flic your wrist. You need to have it on continuously, day and night apart from showering. As a reward though, you may see your arm losing centimeters… After that, you would wear a compression sleeve to maintain those results. At night I am wearing a “Tribute” sleeve, a sleeve with thick padding that covers the hand and arm but is less tight than my day sleeves and gloves. Night sleeves must not be too tight because as you are asleep you may not notice any numbness if circulation is cut off, and do more damage.
There are three levels of compression, I, II, II. Level I is the least compression, III is the most. Of course, level I is far more comfortable, especially for the glove.
All compression garments are made of flexible, knitted material, to make sure breathing of the skin is allowed. There are several companies and brands, offering different types. Some expand sideways only, others expand lengthwise as well and this has to be taken into account when fitting. If it expands sideways only (eg Mediven) then the sleeve will become shorter with time, if it expands lengthwise (eg Juzo) it will get longer with time. The same is true for gloves. If the glove covers the fingertips then the fingers may get shorter with the wash and the finger may tend to punch through the fabric. I cut the seams to let my index-fingertip through, to be able to use a mouse or the cellphone!
Your fitter knows all these issues. The degree of compression is very important. Too little and there is no effect, but if there is too much compression there is a danger of infection if the pressure is cutting through somewhere, or because it does not allow the lymph to circulate enough. An infection can be life-threatening if left untreated!!!
(More details on cellulitis in BCAK website, under lymphedema and cellulitis).
Cost of the gloves/sleeves: The cost can be substantial, ~1,000$ every four months for two custom-made gloves and sleeves of most brands. The assistive devices program (ADP) of the Ontario government covers 75% of the cost. You need a form that must be signed by an oncologist or radiation specialist (not a family doctor), plus a physiotherapist licenced for this, plus a fitter. The form is good for two years. The 25% is often covered by private insurance. Great-West that covers Queen’s employees asks for a copy of the ADP form AND a letter from your family doctor every time you make a claim. However these things change often depending on the insurance plan. You are supposed to wash them every day to maintain elasticity. In general they must not be put in the drier because the heat destroys their elasticity.
You can often get a sleeve with an elastic, silicone band at the top that sort of sticks to the skin, to prevent the glove from sliding down. However, after some time you may develop an allergy to the elastic and have to avoid it.
Skin care is very important. I use “Lymphaderm” cream. You have to massage it gently into the skin with upwards strokes till it is absorbed completely, because most creams may damage the elastic of the sleeve if not absorbed well. Mosquito sprays may damage the sleeve too, if applied directly.
Wear a glove or not? If you’ve ever had any hint of symptoms in the hand — for example, heaviness, tingling, or swelling — no matter how mild or short-lasting, then you need to wear a glove too to reduce lymphedema of the hand. Also, wearing just a sleeve might trigger lymphedema in the hand. A glove or gauntlet may be recommended as a precaution until you see how your body adapts to the sleeve, if your hand is not swollen. In any case, if you haven’t had any hand symptoms, your lymphedema therapist may ask you to pay attention to any changes in the feeling or appearance of your hand. “We really want to avoid lymphedema in the hand,” says Andrea Cheville, MD, associate professor of physical medicine and rehabilitation at Mayo Clinic. “It’s hard to treat and it is much more functionally debilitating — whether you use your hand to type, write, play music, or for other activities. So it might be wise to wear a glove if you are in a situation where you don’t really need to use your hand”. Using a glove that leaves the fingertips free may be easier than one that keeps fingertips covered. However, the fingertips may swell enormously if eg you are typing on the computer and get an infection. (I did…).
A sensitive point in the arm is the elbow. As it bends, the inside may get irritated by the elastic fabric, and the outside may be hurt by hitting at corners. Some companies offer sleeves with a thin underlay in the inside, but for me it is not enough. I prefer to wrap an “artiflex” (soft and fluffy) bandage around my elbow before I put the sleeve on. You can find it at Shoppers Home care stores (Figure 1).
If you have localised, hard fibrotic tissue you may need to use foam chips or other material over these spots to break them up. The problem is, how to pass a tight compression sleeve over the bandages and chips. This is especially important because the slightest scrape as you are fighting to put the sleeve on may trigger and infection… The answer is, a sleeve-slider: It is a “double pouch” of very slippery cloth that helps to slide the sleeve on over the bandages or chips, then it is removed. You can buy one or make one yourself. BCAK offers them for a donation. There are detailed instructions on how to make one in the BCAK website, under ‘lymphedema”.
To avoid bandaging for months that takes hours to do, I used another trick “Graduated sleeving”. I cannibalised some old sleeves, ie I removed some material from the top of the sleeve, 5cm or 8 cm. Then I put on one sleeve up to the armpit as usual, then the second one on top up to the middle of the upper arm, then the third one up to the elbow. With a slider you can put them on fast and you do achieve the graduated compression. Also, if the arm has lost volume, then you can remove a few millimeters by sewing it in. An added advantage is that mosquitoes can not bite though two (or three) sleeves.
The glove may need special doctoring: Although gloves are marked as “left” or “right” hand, they are made flat, ie with the thumb on the same plain as the rest of the palm. But, for most things, eg to use a mouse, the thumb has to be at almost a right angle to the palm. The glove was cutting through the bottom of my thumb, making it numb. To bring my thumb to the correct position, I sewed in a “pleat” (Figure 2). By trial and error I figured out the exact curves.
Another problem arose because my first knuckle is “sticking out” too far and was rubbing against the glove and giving me cellulitis(!). I made a pad from foam, with a hole at the position of the knuckle, covered it with elastic material (Fabricland, used for petticoats), and stitched it under the glove. My knuckle has healed and feels fine now.
The measurements are taken by the fitter at specific points of the hand, as instructed by the companies. Unfortunately, they are not perfect, one size does not fit all. I have a bone projecting at the bottom of the metacarpal of my thumb, a spot that is not measured by the company. So, all gloves I ever got were way too tight on that spot and hurt. Back to my trusted sewing machine, I added a spindle-shaped piece at that spot, cannibalised from an old glove.
Exercises: There is a variety of exercises but in general they are mild, ie not strenuous or difficult. Heat must be avoided, because it will worsen the swelling. The exercises are mostly movements of arms or legs, twisting the trunk to stimulate the thoracic duct the main lymphatic organ, rolling the shoulders etc.
I very much like exercises in the water, because as the heat dissipates, you do not warm up, which may increase the swelling. Dorit Tidhar, a physiotherapist who specialized on Lymphedema under Dr Anna Towers in Montreal, has prepared an exercise routine available on video (see link under BCAK website, http://bcakingston.ca/lymphedema/exercises-in-the-pool/).
Massage: It has to be very light, like sweeping crumbs from a surface. It starts from distal parts, before massaging the arm itself. It has to be done by a massage therapist and it usually has to be intensive at the beginning, ie right after diagnosis. You massage the lymph nodes too, on the temples, neck and throat, clavicles, groin and this stimulates them to contract and pump lymph.
Unfortunately, massage is not covered by ADP or by many private insurance companies, eg the Great-West program of Queen’s.
The following video shows how you can do it yourself: https://www.youtube.com/watch?v=3PmHuanqbAQ
Avoid heat: Avoid hot baths and saunas. Even in winter, being close to eg a fireplace or stove as you are cooking can be dangerous. Apparently, the chemotherapy together with the removal of lymph nodes may make you sensitive to heat. Also, tamoxifen or aromatase inhibitors may give you hot flashes. I got a weird but common condition: If it is hot I turn very red but I don’t sweat much, ie my temperature control is poor and I get very uncomfortable (damage to the sympathetic system?). To top it off, my arm swells badly with the heat and as the compression sleeve and glove hold it down, I may get an infection.
How to cope: Avoiding heat totally is impossible, but I certainly avoid the sun. In airplanes I start the overhead fan and hold my arm up against it. If this is still not enough I soak the sleeve and glove with water and hold it against the fan high. Of course, the humidity helps the growth of bacteria, but the tea-tree oil and other oils in the “Lymphaderm” cream I use on the arm helps prevent this. I also carry a small fan in airplanes that plugs into the USB of my laptop and has batteries too, and a bigger fan that plugs into an ordinary outlet for meetings. [Unfortunately, if I go to the opera (my daughter is an opera singer) then I cannot use a fan…]. Another trick to avoid infections is to carry a small spray bottle and spray water periodically on the sleeve and glove. As it evaporates, it does cool enough without wetting all the way to the skin and causing infections.
Surgical treatments: These are new approaches, but although promising they are still largely experimental. Lymph nodes are removed from places where we may have extras, eg the omentum a membrane holding the intestines together, and transplanted to different places of the arm. Or, the lymphatics may be joined, ie anastomosed (sewn together) with veins to facilitate drainage. The following videos explain these procedures:
In Canada, these are performed at the CHUM in Montreal:
Figure 1: The arrow points to the fluffy “artiflex” bandage that shows under the compression sleeve.
Figure 2: The arrow points to a “pleat” I made to bring the thumb to a more natural position.
Following are some books on lymphedema:
-Ehrlich, Vinje-Harrewijn, McMahon. Living well with Lymphedema. LymphNotes, San Francisco 2005
-Ehrlich, McMahon. Voices of lymphedema . Lymph Notes. San Francisco 2007
-Thiadens, Stewart, Stout. 100 questions and answers about Lymphedema. Jones and Bartlett publishers, Sudbury, MA. 2010.
(in my humble opinion, none of these books stresses the fact that excessive compression by itself can cause an infection, without any cut or scrape)
Leda Raptis, PhD, professor, DBMS, Queen’s University
…and breast cancer survivor with lymphedema since 2011
…and amateur seamstress