As those of you who read by blog know, I am both a thyroid cancer and a breast cancer survivor. I try to write about subjects that can affect people who have/ have had one or both of these cancers. Lymphedema is a condition that can affect anyone who has had cancer. While there is no cure for lymphedema, there are several ways to manage lymphedema, thus achieving a better quality of life. When I was looking for articles on lymphedema, I came across a wonderful quote by a physician who works for MD Anderson. Dr. Jan S. Lewin is a professor in the head and neck surgery department and section chief of speech pathology and audiology. She said :" There's such a focus on cancer that patients don't see past the diagnosis and treatment to understand the outcomes they will face and the quality of life challenges that lie ahead. " I think that Dr. Lewin hit the nail on the head with this statement!
Using myself as an example, for the hundredth or so time, after my diagnosis and treatments for my cancers, it was over ( except for routine checkups and blood work) as far as my doctors were concerned. I appreciate the amazing work they had done to get rid of the cancers, but what do I do now? How do I manage the aftercare and challenges that being a cancer survivor brings? How do I improve upon my quality of life?
Lymphedema is a condition that affects many cancer patients after surgery, radiation and chemotherapy. Lymphedema is defined as the swelling of tissues caused by the accumulation of lymphatic fluid. A healthy lymphatic system will carry extra fluid to the blood vessels near the heart. Lymph nodes filter viruses, dying cells, foreign matter, and bacteria. This is part of a healthy immune system, when the lymphatic system is working properly. One estimate I saw states that there are between 500-600 lymph nodes in the body! The groin, arm pits and neck seem to have more lymph nodes than other places in the body, but lymph nodes are scattered throughout the entire body.
Lymphedema usually happens 2 to 6 months after treatment, but it can also occur YEARS after treatment. Since there is no actual cure for lymphedema, it is prudent to get a diagnosis as soon as lymphedema is suspected and start on treatment and care. What are the symptoms of lymphedema? They include swelling ( both internal and external) near the surgical/treated place, a feeling of tightness in the area affected, restricted movement, recurring infections, and sometimes thickening of the skin.
When one thinks of lymphedema, one thinks of the arm ( as in breast cancer patients ) or leg being involved. It can occur anywhere in the body because of all of the lymph nodes that we have. If it does occur in the head or neck ( in a thyroid cancer patient for instance) it can involve the oral cavity, tongue, larynx, airway and throat. These places would be considered internal lymphedema sites. External lymphedema sites ( in head and neck cancers) can occur in the neck and face and can also occur in the lips, nose, eyelids and ears. One can have internal, external or both.
The more lymph nodes a person has had removed, the greater the chance of that person having lymphedema. Diagnosis is often made by a patient's signs and symptoms, but can also be diagnosed by MRI scan, CT scan, ultrasound, and a test using a radioactive dye and scan.
In my case, I noticed a change in my left arm. I had had three sentinel lymph nodes removed during my bilateral mastectomies. It was several months before I noticed a difference ( size and swelling) between my left and right upper arm. I made an appointment with my family care physician, who referred me to a special physical therapist ( a CLT-LANA ). This is important! These physical therapists have hundreds of hours of training to learn how to treat lymphedema. They learn how to do the special massage to help move the excess fluid from the site. The massage is a light, circular massage- not deep tissue massage. Our lymph nodes are located close to the surface of the skin, so only light pressure is needed. CLTs also can do measurements to check any progress made, as well as measuring for compression garments. They can also teach patients how to do the massage at home. The CLT that I saw taught my husband how do to the massage for me. It really helps with the swelling.
Treatment for lymphedema can also include light exercises to move the fluid, compression bandages, and sequential pneumatic compression- which is a pump system that moves the fluid. Having lymphedema also increases the risk of skin infection. This is called cellulitis, and can be caused by cuts, bug bites, and other injuries to the affected limb. Cellulitis requires the use of antibiotics quickly to prevent sepsis. Some signs of cellulitis include redness, rash and the skin may feel hot to the touch. If one thinks one may have cellulitis, a trip to the urgent care or ER is warranted.
On the subject of compression garments, there are a few options. After a CLT-LANA measures the arm or leg for example, one can determine the size needed for a compression garment. There are prescription compression garments- some but not all -insurance companies will pay for them. They are tight and require a special "sack" to slide the garment onto the leg or arm. I tried these at first, and although some people like these and get good results, they just did not work well for me. There is another choice and it is called Active massage, by Solidea. In my opinion, the garments are more comfortable, while providing light to moderate compression with a wave type system. They are available for the arm, leg, abdomen, hand ,feet and perhaps other sites. This is my personal choice, but everyone is different of course. I think the company is working on getting insurance coverage, but so far I have not gotten my insurance to pay for my garments. Since they are comfortable and easier to put on than the traditional prescription garments, they are a good fit for me and I do wear them almost every day.
There are other ways to provide good self care if one has lymphedema. Wearing compression garments is one way, of course. Learning how to prevent injury ( so as not to get cellulitis), moisturizing the skin, avoiding tight clothing- especially in the area affected, getting enough sleep, eating a good diet ( lots of veggies and fruit), reducing stress ( good luck with that one!) and including exercise, even a walk, daily are some ways to take good care of oneself. It is also helpful to get support from lymphedema groups if available to you. Talking to others with lymphedema can provide emotional support as well as finding out other ways to practice good self care. I follow a very good blog, " My Lymphedema Life" by Sue Callison, who is a breast cancer survivor herself. She provides some very good info on techniques to manage lymphedema. In the spirit of full disclosure, Sue recommends Solidea active wear garments, which I wear and prefer over the traditional prescription garments. As I stated above, everyone is different, and a traditional garment might be best for you. I do not receive any compensation for mentioning this site, but I do suggest that if one has lymphedema, it would be good to check Sue's blog out.
So in summary, lymphedema is a chronic condition with no cure. There are new surgical techniques that may be helpful, but are not widely available. I did not include them in this blog, but if one is interested, one can check on the Mayo Clinic microsurgery website. The success rate for the surgery is 0 to 42%., according to their studies. I would like the "takeaway" from this blog to be that while lymphedema is not curable as yet, it can be managed so that there is improvement in a patient's quality of life. Lymphedema can occur anywhere lymph nodes or lymph glands are removed or damaged- arms, legs, head, neck, etc. I think that everyone has to be their own best patient advocate- especially concerning lymphedema. Know the signs and seek the appropriate help and treatment.
