I am a breast cancer survivor who did well through surgery and treatment, however, I developed lymphedema due to the radiation treatment.
Lymphedema has caused me to miss extraordinary amounts of work and I have had to stop many activities (running, golfing, kayaking, softball) that kept me healthy for four years now.
Two years after my cancer treatment my lymphedema flared up and I developed cellulitis two times which caused me to be hospitalized and to further limit my activities and required that I take antibiotics for over one year (followed by infectious disease).
As for maintenance, I am required to wear compression garments, tanks, sleeves and gauntlets (glove) while I work, exercise or fly. When the lymphedema is flared up I must wear these every day. Insurance only covers one sleeve every six months, which you must wash after each time you wear them to restore their compression properties. I have spent thousands of dollars on compression garments as I am required to wear them every day. I try to make the best of this and “match” my sleeves with my outfits, and present a positive outlook, but this is truly very depressing.
I may go months without needed active treatment, however, as now, I am on work restrictions and in a considerable amount of pain with swelling that compresses nerves which cause additional pain and makes daily activities difficult. Even following the guidelines to stay healthy isn’t a guarantee as something as seemingly insignificant as a bug bite on the affected arm can cause the lymphedema to flare. My physicians have referred me for Occupational Therapy to treat this, which is the only real way to get through these bouts, and my insurance has denied me this treatment. So, even though I work in healthcare myself at a world-renowned healthcare facility I am unable to receive the medical treatment I need to continue working and living without limitations.
It is unbelievable how many people, including cancer patients, are not familiar with lymphedema and it’s seriousness and the fact that patients can develop this any time after cancer treatment when your lymph nodes are affected. As I wear my compression sleeves I am constantly educating people as they ask about the sleeves.
Although I am obviously grateful for having survived cancer, and just reached my 5 year cancer-free milestone, the lymphedema is a chronic, life-long (as I’m constantly reminded) condition.
As physical/occupational therapy is the only really effective treatment for my lymphedema which would make it possible for me to return to work full-time without restrictions, it is incredible that my insurance will not cover this treatment. It is my understanding that insurance will only cover treatment for lymphedema once a year and if it flares up more frequently you are out of luck. Going without treatment can lead to more swelling, pain and possibly infection, more time out of work and an overall reduction in quality of life.
Please support the Lymphedema Treatment Act and tell your friends.
