Candace's Synovial Sarcoma Journey

Hey there, I'm Candace and I have Stage IV Synovial Sarcoma. I was diagnosed right before my 21st birthday. The tumor is located on my femoral artery in my groin. I did 3 rounds of continuous chemotherapy through a PICC line that was placed in my arm. My hair fell out 2 weeks after the first round. It devastated me. After those 3 rounds of chemo, I did 25 radiation treatments that were administered every single day. Then I had an MRI that showed the tumor had decreased from 6 to 3.8. It was incredible! I had the tumor resection surgery on June 25th, 2013. It was a huge success but unfortunately they had to take out a couple lymph nodes they suspected had cancer cells. When they took out the lymph nodes it caused lymphedema in my leg that will be lifelong. I can't get anything to bring down the swelling. I've tried a pump and a customized leg wrap and I have a compression garment I've been fitted for and ordered. I'm hoping something works! My doctor told me December 6th, a day before my birthday, that I was in remission. I was stoked! I couldn't believe I had finally beaten the impossible. I was told I had a 30% chance of survival. Here comes the storm... I had a PET scan right before Christmas. The cancer has now spread to my lungs. At the beginning of this journey my oncologist told my Mom that if sarcoma ever spread to my lungs I wouldn't have a chance at beating it. My Mom has been more than torn up.. and I want to prove that jerk wrong. He had no right telling my Mom I'm going to die. I'm currently looking for a new oncologist. I know that I can win. I have an incredible support system but limited funds and that's where life kicks me down. It all comes down to money..


Update: At the moment, I have to wait for the tumors in my lungs to get a little bigger to biopsy. The biopsy leads to the pathology and the insurance company needs the pathology. So, its a waiting game. I'm going to be doing more and more chemotherapy and radiation to the chest... I'm so not looking forward to another year of this.