The bad news first, and then the good news: most women dealing with breast cancer are so focused on getting rid of the cancer, thinking that will be the end of it. Lymphedema may be the furthest thing from their minds. But there's a high probability they'll have to deal with this disease, as high as 50/50, according to the National Cancer Institute.
The good news is that specially trained physical therapists can make this much less traumatic. And further good news: help is nearby! Grace Cottage now has two physical therapists certified to provide this therapy, Cindy Kenyon and me.
In order to explain what is involved with Lymphedema therapy, it is helpful to first understand what causes Lymphedema.
Lymph is a fluid that moves through the body in order to remove impurities and infections. The lymph nodes filter the lymphatic fluid with the help of white blood cells and are part of the system that keeps the fluid moving. When lymph nodes are removed as part of a cancer treatment, or are damaged by radiation, there is potential for the lymphatic fluid to build up, causing a swelling called Lymphedema.
Lymphedema can also be congenital, meaning you can be born with the tendency; this type mostly affects the lower extremities. It can also be caused by chronic venous insufficiency (improper functioning of the valves in leg or arm veins). Whatever causes it, the treatment includes the same techniques.
The bad news is that, once it appears, Lymphedema is always permanent. Sometimes it shows up fairly quickly after cancer treatment; sometimes it doesn't show up until years later. It usually begins slowly and progresses in intensity. If allowed to progress, it will cause significant debilitation.
The good news is that, when caught early and treated with special therapy, the effects of Lymphedema can be minimal. So it's important to know what signs to look for.
In the earliest stage, Lymphedema may be experienced as a swollen limb that feels heavy, with skin that feels tight, and perhaps there's a sense that clothes, watches, rings, bracelets, or shoes are becoming too tight. Those who have been treated for cancers other than breast cancer may have this feeling in their feet and legs, while those dealing with breast cancer usually experience it in their hands and arms.
It's important to consult your medical provider if you are noticing any of these symptoms so that the diagnosis of Lymphedema will be accurate. There are other things that can cause swelling, and it is important to rule these out first.
For those with Lymphedema, any structural damage to the lymphatic system caused by the cancer treatment cannot be cured or permanently repaired, but the effects of this damage can be improved by the various aspects of Lymphedema therapy.
First, a Lymphedema therapist can help by performing and teaching a patient to perform a mild form of massage called "lymphatic drainage," which is a very gentle touch therapy. This helps to drain any build-up of fluids. It is important to get instruction before doing this, as the technique must be performed correctly in order to help, rather than hurt, the situation.
Patients will also be fitted for compression garments, the cost of which are usually covered by medical insurance. Unfortunately, at present, the bandages, also required for treatment, are not usually covered. Bandages and compression garments help to keep the swelling down.
Patients need to be aware that this first phase of treatment can be intense, requiring an hour or two of therapy per day for up to two weeks. It requires commitment, but it is the only effective treatment for Lymphedema.
After the initial two weeks or so of therapy, patients will be prepared to self-manage the disease. They will know how to perform the lymphatic drainage massage on themselves, and they will know how to use the bandages and compression garments. At this point, less frequent office visits will be needed.
In addition to these important treatment techniques, Lymphedema therapists teach their patients several lifestyle approaches that can help. For example, because the lymphatic system that helps to remove infection has been weakened, it is important for patients to take extra good care of their skin so that it does not dry out and crack, thereby allowing infections access into the body. Also, certain exercises can be done in moderation to help keep lymphatic fluids moving. And weight loss can help to reduce the effects of Lymphedema for some patients.
A diagnosis of Lymphedema can seem like a low blow for those who are already dealing with the profound complications of a cancer treatment. It is important for them to realize that there are caring and specially trained therapists ready to support them and to provide help.
Abigail Abbott joined the Grace Cottage Rehabilitation Department staff in 2015. She has a Bachelors in Russian language and literature from Columbia University and a Masters in Physical Therapy from Boston University. She is a Certified Lymphedema Therapist, trained by the Academy of Lymphatic Studies. Cindy Kenyon, PT, has been a member of the Grace Cottage staff since 2008. She earned her CLT certificate from the Dr. Vodder School International.