Mary E

Arlington, VA

I have secondary lymphedema in my left breast, underarm, torso, and upperarm after a lymph node biopsy surgery on April 18, 2019, a date and event that I truly regret. I went through the lymph node biopsy surgery against my better judgement and at the behest of my surgeon, only to later find out that studies have shown that stage 1 breast cancer patients have the same survival rate when they go directly to radiation and forego lymph node removal since radiation will kill any cancer cells in the lymph nodes. This information is and was not new, and my surgeon didn't inform me of it or any alternative options for that matter. Moral of the story: Do your own research and get all the information before making decisions that will have life-long consequences (And remember, all surgeries and medical interventions have consequences and can't be undone once done). My surgeon continues living her life uninterrupted, while I can no longer hold my phone in my left hand. I still can't believe that I let her talk me into that surgery. Everything changed for me on that day in April. Now my body can no longer do for itself what it used to. I spend hours and my days around managing my lymphedema. This situation is unnecessarily my new normal, and nothing could've prepared me for it. I think lymph node removal is cruel and inhuman. Unfortunately, there is so much ignorance about secondary lymphedema, even in the medical community. Many people do not realize that it is painful, a deep aching-in-the-bones painful. I can't change my circumstance now, but I can advocate for not removing lymph nodes in stage 1 breast cancer patients, or at the very least informing them of their options and letting them make their own decision. I wasn't given my options and didn't have the opportunity to make my own decision. In fact, my surgeon told me that people don't suffer from lymphedema nowadays! SMH. More awareness and education needs to be brought to this malady. I appreciate this forum and organization in their effort. Hopefully, people in the future will look back at this practice and think how barbaric, just like we do about bloodletting. I want to stop others from needlessly suffering, and I want surgeons to stop overprescribing this procedure! Thanks for reading.