My mother was first treated for breast cancer in the 80’s, with a radical mastectomy and an overdose of radiation therapy. She developed lymphedema, and the only treatment offered at the time was a pump, which was so painful for her to use she refused to use it at all. As a result, her arm was enormous, extremely painful and debilitating. She developed cellulitis many times, and had to custom make her own clothes to fit. When she had a recurrence of BC in the 90’s we dreaded that the same would happen to her other arm, but fortunately it did not.
Her life, from the onset of lymphedema to the end, was a misery. Every daily activity was restricted by the swelling. Her self-esteem suffered, although she never really let on. I can’t help but wonder if she often thought she would be better off if her arm had been amputated.
When I was diagnosed with inflammatory breast cancer in 2004, I was absolutely terrified that I would suffer the same fate. I begged my surgeon repeatedly to do whatever she could to prevent lymphedema, and she assured me that I would be fine. However, I did develop the swelling several months after surgery. The horror I went through while waiting for treatment was something I would not wish on anyone. I envisioned the same life for myself that my mother suffered.
Fortunately, the study of lymphatic treatment has come a long way. I was able to see a very competent therapist, who trained me to manage and treat my condition to keep it under control, and I have been diligent ever since. I count myself lucky that my arm has remained mostly stable and normal for 9 years. However, even though I have insurance, the financial burden is difficult to bear. My insurance does not pay for most of the costly garments, and I have a hard time coming up with an extra $500 every six months to pay for new custom gloves and sleeves. If I were to lose my job, or suffer some financial setback, I don’t know if I would be able to pay for new garments, and those are the only thing standing between me and the fate my mother suffered.
Something must be done to ensure that those of us suffering with this condition, a lifelong side-effect of a life-saving treatment, can at least treat the condition affordably. The indignity of lymphedema makes cancer survivorship just that much harder.
