Three years ago, I was diagnosed with breast cancer in my left breast, during a biopsy. I had chosen to have a mastectomy if the lump was malignant, due to the size. I had also been prepped with the radioactive dye that lights up the lymph nodes, should they be cancerous also.
The three sentinel nodes under my left arm were cancerous, and the surgeon opted to take 8 more “to be safe”. None of those, he said, appeared to have cancer but he took them so a biopsy could be performed in a laboratory setting.
Very soon after surgery – within a week – I had issues with fluid retention in my left arm and the area of the surgery across my chest – moreso than the drainage tube was meant to drain. While in a checkup in the surgeon’s office, he withdrew a large syringe-full of fluid from the area of my left breast. This reduced the swelling for a few hours, but it quickly returned.
Within 6 months of surgery, I was sent to an Occupational Therapist for the swelling and edema in my arm. Her training and solution was to wrap the arm in firm foam, daily, and manual lymph drainage massage in which she had training. These methods were very mildly successful but in no way permanent or possible for me to do without seeing the therapist on a daily basis, and insurance won’t cover that many visits. The foam wraps are very uncomfortable, restrictive to movement and create additional heat, and for the time periods I was supposed to remain wrapped, would have made it impossible for me to continue to work. I am a single-income household and cannot afford to go to disability or to be without the insurance coverage necessary to pay for the medications and treatments needed both for my continuing cancer maintenance and the lymphedema care.
Within the first 18 months post-surgery, I researched lymphedema control methods – pumps and other potential resolutions for this – and determined for my need that the Tactile Systems Flexi-touch system for manual lymph drainage would allow me to perform this aspect of maintenance at home, for an hour (or potentially 2) per day and be of great assistance. I was fitted by a lymphedema specialist RN, and the process began. It took nearly another year, through appeals, primary care doctor letters, and several more appeals by the Tactile Systems company to get approval for this device. During that time, my left leg became much more affected by lymphedema – which is not unusual since left-side lymph ducts handle more total % of the body’s lymph fluid and mine were terribly compromised by chemotherapy, radiation, and the missing 11 nodes including the sentinel nodes. When the RN with Tactile Systems did my appraisal, she noted the slight (at that time) swelling in my left foot and lower leg and correctly told me that it was due to the effects I had in my left arm, and she ordered me a lower body AND upper body set so that I would have a better opportunity to control this as it progressed and worsened. I am grateful for her foresight so I do not have to fight for another year with my insurance company to get this device.
I dread the time when the garments no longer work as their supposed to, and I need to replace them. I dread the time when the 2 year warranty on the motor is over, and the insurance needs to be involved in replacement if (when) it fails. The struggle I had the first time was harsh, and I have a different insurance company now, so am anticipating a similar fight and hoops and time.
There needs to be better recognition of this result of cancer surgery (or any type of surgery, I’m presuming) where lymph nodes are removed, where chemotherapy is used, and/or where radiation is used. My arm-lymphedema became much worse after radiation, and my radiation oncologist told me this was permanent. More research and more understanding both from the medical profession and insurance companies must be advocated and treatments found.