Getting the Attention We Deserve
I would like to congratulate Kathy Bates for coming out as a spokesperson for LE&RN (Lymphedema Education & Research Network), as she has been struggling with lymphedema herself. A surviver of ovarian and breast cancer, Bates shares the same frustration and burning question that I frequently hear from my clients: "Why wasn't I informed?!?" As she states, she is indeed lucky that her lymphedema was detected in an early stage, but has discovered its debilitating lifelong effects. What I found most compelling was the statistic she shares, that an estimated 10 million Americans suffer from the chronic disease, and yet most people have no idea what it is, in a country where cancers are an epidemic.
What Kathy Bates does not say in this particular interview, that I would like to express is this:
- It is the responsibility of every doctor to be informed about lymphedema. (One of my clients was treated dismissively by his doctor and told to reduce sodium intake!) It is the responsibility of every oncology surgeon to discuss the possibility of lymphedema after a surgery, and the impact this could have on their patient's life. Cutting out lymph nodes needs to be understood for the risk that it is.
- Insurance companies need to be covering expenses related to lymphedema. The therapy is ongoing and it is not cheap. There is no alternative and there is no cure.
- Everyone needs to understand that swelling after a cancer surgery is a serious concern and should be given proper assessment as soon as possible, in case of lymphedema. Lymphedema does not "just go away." It needs attention and the longer it is neglected the more of a struggle it can create for the patient.
- Prevention is key. Understand the function of the lymphatic system in the first place. This is where the body is ridding itself of cancer and pre-cancer cells naturally. Learn how it works and how to keep it running on its own optimally!
So why isn't lymphedema a bigger part of the cancer discussion, when 10 million Americans suffer? I think it is a shame piece on both sides. One of the most difficult things to come out and say about our health is, "I'm worried, this doesn't feel right." And one of the most difficult things for professionals to say to a patient is, "I don't know." It's very difficult to discuss what we don't understand. So on both sides the elephant keeps getting shoved under the carpet. Thank you Kathy Bates! It seems to take a celebrity in our culture to come out and say, "Hey! This is important! We need to know more about this!!" Yes, it is a REAL issue. No, it doesn't go away. Keep prodding. Keep prodding. This is how evolution happens.