I developed lymphedema after I was diagnosed with stage 3 Breast Cancer in 2008. I had positive node involvement. I went through six months of chemotherapy, followed by a bilateral mastectomy, 9 lymph nodes removed (all free of cancer after the chemo), 7 weeks of radiation, 1 year of Herceptin treatment for my HER2 receptor, and 5 years on Tamoxifen for my hormone receptors.
The lymphedema seemed to become noticeable in 2010. What is interesting is that there is not a lot of information given about it. I think they do more of it now, but not at the time of my diagnosis. There are limited resources for treatment as well. Only a handful of specialized therapists are available. The doctors seem not to have a clue. The Health Insurance Companies do not understand that this is a life long illness. They only allow limited treatment. Essentially they treat it like a sprained ankle. If you go past the allowed dates, they deny. They deny compression sleeves. They deny specialized compression pumps. Both of these would help keep the fluid build up managed. If they would pay for this, they would save money in the long run.
It was bad enough going through cancer and beating it, but to have to live with this lymphedema has been so depressing. I hate it. I would much rather go through chemotherapy all over again instead of dealing with this. I am angry that the treatment for this illness is having to wrap your arm up in about 6 different bandages as the first stage of treatment. It is impossible to sleep wearing this. I have moved to a night sleeve, but even this is not easy to sleep comfortably in. The fact that my left upper arm will be big for the rest of my life angers me more! More research and more awareness needs to be done to maybe one day find a better way to treat this. How I wish it was as simple as draining it once a month. I would sign up for that! I admit, I am not the most compliant person. I do not wear my sleeve like I should; but then again, I have yet to have one that fits me well. I hate the look! I hate how they have skinny models with skinny arms and big smiles, modeling the compression sleeves. This is not something that those with lymphedema get exciting about wearing!
I am only 45, I should be in my prime and enjoying life, but instead I feel depressed and angry, not because of the cancer, but because of the lymphedema that I am stuck with. I cannot do a thorough cleaning of my house or move items to good will or trash if they get too heavy. I used to be able to do all of this before the lymphedema. I don’t handle this well and I don’t ever see me being able to deal with this. The Insurance Companies make it worse! I have a $2000.00 bill pending on two compression garments. Sorry this is not a happy story, but this is my story.
