cancer carries a lot of baggage with it. PTSD, anxiety, fear of recurrence, also fear of getting a second primary cancer ( it is about 30% after thyroid cancer), testing anxiety, and other health disorders. i am going to discuss lymphedema. why? well, i have this condition due to cancer surgery, for one thing. for another, i know of several people who have this disorder/ side effect and need more information . i was not prepared for the lymphedema. i thought that the newer surgery for breast cancer- removing and testing the sentinel node, thus removing fewer lymph nodes, would prevent this from happening. i will add here that the sentinel nodes are the first ones into which a tumor drains. tracer material (a dye) is injected and used to detect these nodes so that they can be removed and tested. removing fewer lymph nodes lowers the risk for lymphedema, i assume, but it certainly does not eliminate it. i also had surgery for thyroid cancer, at which time eleven lymph nodes in my neck were removed .
we have literally hundreds of lymph nodes in our bodies. the function of these lymph nodes is to help the body collect waste products, and probably more importantly, is a vital component of our immune systems. the best description of a damaged lymphatic system that i have ever heard came from my physical therapist. she said " imagine that our lymphatic system is a ten lane highway, transporting fluid into our blood stream. everything is going along fine until some lanes are closed. all of a sudden, that ten lane highway becomes a two lane, or even one lane highway. imagine the backup!" if this were a backup of cars, there would be wrecks and a lot of cursing. the backup of our lymph nodes will probably result in lymphedema- or swelling in the part of the body affected, as well as immune depression in that area.
it is important to note that while lymphedema is more commonly observed in the arms and legs, it is quite common in people who have had head or neck cancer. lymphedema at any location is best diagnosed and treated early. untreated lymphedema can cause many consequences- from heaviness in the area, to visible edema( swelling), soft pitting edema, and lastly, firm pitting edema which has permanent tissue changes. patients who have had surgery and/or radiation for head and neck cancers have about a 50% chance of developing lymphedema. LET THAT SINK IN! i was surprised when i read that statistic, which comes from four European studies.
how do you get a diagnosis? there are some expensive tests, or the most common way is by observation, patient history ( cancer surgery and treatment), and measurement. in my case, i saw a physical therapist. and not just any physical therapist, but one who is a CLT( certified lymphedema therapist). a CLT has to have at least 135 hours of training and pass an exam to be certified. a physical therapist who is not a CLT, may get some lymphatic training in school, but i would heartily recommend going to a certified physical therapist.
this is my experience with getting a lymphedema diagnosis and receiving some treatment. i noticed that the arm on the side where i had sentinel lymph nodes removed during my bilateral mastectomies, was beginning to swell a bit. this was several months after my surgeries and treatment were finished. i asked my family doctor for a referral to my physical therapist, who then measured both of my arms in several areas. this measurement was done a couple more times during and after my treatment to measure my progress. the treatment my physical therapist used is called " manual lymph drainage massage". this encourages the flow of lymph node fluid out of the arm or leg. it is not for everyone. if you have blood clots or infection, massage should be avoided. lymph nodes are very close to the surface, so the massage used is gentle, and the CLT did the massage in a particular order to get the fluid moving in the correct direction. this worked very well for me, and i showed improvement after several sessions.
i also wear a compression garment every day. the one i wear is called an active wear compression garment. it gently stimulates the lymphatic system. i tried the traditional compression garment, and while it may work for some, it was tight and uncomfortable for me. i found myself not wearing it because it was so tight and difficult to put on. i really like the active massage garment. it is an important part of self care, which is where i am now. i will also mention that it is important not to get sunburned or injure the affected limb ( bug bites, cuts, etc) if possible. remember that your lymphatic system is compromised now, and even a small cut or bug bite could cause cellulitis- a serious skin infection.
Lindsay Lewis, a CLT at MD Anderson cancer center, uses a special program to help patients with lymphedema caused by head and neck cancers. it involves gentle massage, special garments, skin care techniques and special exercises. my CLT did tell me that even in the CLT certified physical therapists, there are those who specialize in arms and legs and those that specialize in the head and neck area. be sure to ask what area a CLT specializes in before you begin treatment.
Lymphedema is a life long condition. it can have serious consequences if not diagnosed and treated promptly. there does not seem to be enough information for patients and health care professionals about this side effect of cancer and cancer treatment. i urge everyone who has had head, neck, breast, or other cancers and may think that they have lymphedema to seek treatment. and be informed. remember that knowledge promotes understanding.
Addendum: two important things that i forgot to post! first, be sure to remind your physicians and nurses not to take blood pressure readings in the arm that you have lymphedema in. you should also not get blood drawn from that arm!
secondly, there is a very good blog that addresses lymphedema on a personal level, by a lymphedema patient. her name is Sue Callison and the name of her blog is " Sue Callison- My lymphedema life". she talks about self care and dealing with lymphedema on a daily basis. she also sells the active massage products that i am so fond of!( Solidea Active Massage compression garments) please check it out! and by the way, i am passing along this info with no compensation from her company or anyone else. i do not profit in any way from any of my blogs. i am just trying to help others.
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