My name is Tami. I was diagnosed with Breast Cancer in January 2011. After my lumpectomy surgery in February, my surgeon gave me the news that microscopic cancer cells were found in my “centinel lymphnodes” and that it required that I have a “lymphnode disection” which takes more lymphnodes from under the arm pit area.
After my surgery, I was not provided with any information about lymphedema. All I was told was that a small percentage of patients get diagnosed with lymphedema after this type of surgery. It wasn’t until I started having strange symptoms in my arm and under arm/side area that caused me to be start asking everyone what was going on. No one really knew what was going on, not the surgeon, not the radiology oncologist, not the nurses, not the emergency room doctor. I went to see my surgeon several times with the complaint of what appeared to be tendons or cords in the bend of my arm that were hard and a feeling of fluid build up in my arm pit. She wanted to give me narcotics to help me “push through” the exercises they request patients do after surgery. She made me feel like I wasn’t strong enough or tough enough to push myself harder. While in the office listening to her and crying she asked her assistance to set up an appointment for me to see a physical therapist. I was informed at that time that there is usually a long waiting list to get in to see an physical therapist. After starting my radiation treatment six weeks from the time I was in my surgeons office, I still did not have any appointment with a physical therapist and the swelling started to increase. I asked my radiology oncologist if I could be seen by someone for an evaluation. I remember him expressing that he didn’t seem to think I had lymphedema and mentioned that he wasn’t radiating my lymphnodes, but I kept asking to be seen by a physical therapist trained in lymphedema for an evaluation. Luckily for me that I was starting radiation, the lymphedema clinic considered that an “urgent” reason to get me in and made an appointment for me to be seen right away. Normally they have a very long waiting list.
After my evaluation, I was diagnosed or informed that I did in fact have lymphedema and was treated during my radiation treatment to keep the swelling at a minimum.
My insurance paid for treatment and the pump but not for the very expensive garments that are required to be worn every day, all day to keep the lymphedema under control. The custom fit garments “sleeve and glove” cost approximately $400.00 and have to be replaced every 6 months. That is a total cost of $800.00 per year. You can obtain an off the shelf garment for less money but it does not necessarily fit your arm and hand size and can actually cause some issues in different areas where the fit is not tight enough for the compression to help the muscle do it’s job correctly.
I spent months trying to learn more about lymphedema, the cause the effects and the treatment. No one really knows anything about it. There are no doctors that are trained in it and no scientific studies in progress to help people find ways to improve their plight.
This is a life changing experience and no one really knows anything about it. I had doctors, nurses and others advising me to do things that in fact would cause my lymphedema to get worse in an effort to help some other issue I was having.
Lymphedema patients should be able to get “wrapped” and have the “treatment massage” specialized by only a few physical therapists without having an urgent issue like a serious wound or two centimeter or more increase in the size of their limb. They should not have to sit on a waiting list months long to be seen or speak to someone trained to help them. Their insurance should pay for modalities, treatment and education materials that will help them keep this painful and physically limiting condition at a minimum.
More attention needs to be given to this disease to generate more funding for research to find more and better treatment options.
Thank you for listening…. I hope we can bring more awareness to this very painful and limiting disease.
