In 2011 I had Zero stage breast cancer. I did not have a lump, I had calficifications. In Europe they are monitored and not removed. Here in the USA most of the time they are removed. In so doing, I ended up with lymphedema in my chest/arm/hand. I do know some patients who are being monitored here in the USA. I can no longer work I am age 61. I wish that someone wanted to monitor my condition.
After 6 months I was sent for a follow up mammography. No one asked or cared that I had fibromyalgia. My whole upper body went into spasm, the lymphedema moved around to my side too. Pain went from a 6 to a 10. I was offered pain meds..physical therapy, took 6 months to get my pain back under control. I refused follow up mamographys. 3 months after mammography disaster, I asked to be sent to a Lymphedema Specialist. ..I nearly flew without wearing a sleeve and glove…
-10 months after surgery I sit down with this specialist who gives me a list of warnings as long as my arm. I keep saying to myself it is not my job…not my job…all these specialists and no one monitoring my lymphedema because they are not required to. I should have gotten this education way sooner to make sure that I did not hurt myself. (At about the same time I heard of a 45 yr old patient who started to work out with weights too soon she had a stroke and had brain damage and will never walk again.)
In Jan 2011 my insurance changes and now I have a high deductible HSA. My chiropractors providing me with Lazer treatments..he has the swelling down enough so I am not dreading the changing weather every other day…this is not recognized by Insurance…I pay 100% thru HSA…recently I went to Lymphedema clinic and she wished that she was able to provide Lazer treatments but Insurance does not reimburse,because Medicare does not provide, so it is not made available. Lazer treatments has been a lifesaver because now I can live with my daily pain but do not expect to return to work due to Lymphedema. One last thing, does anyone know if a protocol exists as to when a Lumpectomy is done in USA? I think we found an article that said that it does not exists, so zero stage breast cancer may not need surgery it may need monitoring.
