In the fall/winter of 2006/ 2007 I started to have frequent UTI's and had never had them before. I had 3 different ER visits for extreme pain and bleeding. My primary doctor decided it would be a good idea to do some further testing to rule out some things. I had a CT of my kidneys, a test for bladder cancer and finally, an ultrasound to look at my bladder and ureters. Well nothing serious was found to be causing my UTI's, but something totally unrelated was found on my ultrasound, which probably saved my life. I had a tumor the size of a baseball sitting on my psoas muscle deep in my abdomen.
That led me to Roswell Park Cancer Institute in Buffalo, NY. Where I met my fantastic surgeon who told me I had Alveolar Soft Part Sarcoma. I had a cancer that made up 1% of all cancers, and I had just turned 19. This cancer also has not had the research other cancer's have, and it was and still is needed. I had radiation, inter-operative radiation, my tumor, psoas muscle, and a bundle of nerves removed, along with my right kidney. It took me a year to fully recover, and I still have nerve pain, numbness, and have lost strength and flexibility in my abdomen. I am currently on a clinical-trial for an anti-angiogenic pill called Sutent. I am still fighting the spots on my lungs, and the 50/50 chance a tumor could recur in my abdomen.
Sarcoma's tend to hit a young population, and be chemo-resistant. This cancer desperately needs more funding and research. I donated my tumor to research, but want to do more!
But right now I feel good, and I am thankful for that. Roswell, along with Memorial Sloan Kettering in NYC have made it so I am still here today.
1 comment:
Thank you for sharing your touching story! Sloan Kettering is wonderful! I went to their sister institute in Boston, Dana Farber! If I could give one piece of advice to someone diagnosed with cancer-Go To A Cancer Institute!!! It just might save your life
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