Joseph Siegel - Long Island, NY

When I crawled on my hands and knees into the convention center in Phoenix, only minutes before my final day of matches at the U.S. Volleyball National Championships, I was sure that I had an intense back spasm that could be worked out by the trainers on site. By the time the event the doctor informed me that I had a kidney stone, the pain had gotten so intense that even the morphine couldn’t comfort me. It was just a short while later that the E.R. doctor informed me that the Catscan found the kidney stone…. and that it also found an 11cm mass on my other kidney. That day started a crazy, frightening journey that I continue on to this day. That mass was diagnosed as Adrenal Cortical Carcinoma, a cancer that is only found in 1 out of 2 million people each year. If my luck was better, at those odds, I would have won the lottery years ago! Since that day, 27 months ago, I’ve had surgery, radiation, and six long, grueling months of Mitotane. I’ve experienced a sickening fear every three months as I approach another scan. That feeling is one that I will have to live with for the rest of my life. I’ve come to accept that feeling but not let it own me or paralyze me from living my life while I can. I’m still here, two years later, trying to stay positive, but always understanding the realities of this terrible disease. I try to concentrate on keeping my sense of humor, even during the darkest days, travel often, play beach volleyball when the weather allows, spend time with those who make me smile, and stop for as many moments as my brain will allow to be grateful that I am still here, and doing OK. I have been forever interconnected with some amazing warriors who have travelled a similar journey to mine, and I am grateful and honored to consider them my new friends and family. We are all in this together and always will be.

 

 

Michelle Sudit. - Boston, MA

In October of 2007, I was diagnosed with Adrenal Cortical Carcinoma. All told, my parents took me to Cleveland Clinic, Sloan Kettering Hospital, Roswell Cancer Hospital and University of Michigan Hospital. All we wanted to know was what to do next. Turns out the next step was to have surgery to take my tumor and adrenal gland out. After surgery the doctors told me I would be fine and that all my symptoms would go away. Well, after my surgery I still wasn’t feeling 100% and little did I know, I had a blood clot in my lung from the surgery. For six months I was on blood thinners and Chemo. During those six months I didn’t understand why all of these negative things had happened to me. I was always a healthy child, never smoked and never drank. I kept asking my parents and my doctors what it was that I did wrong for this to have happened to me. My parents and doctors kept telling me that it was just bad luck. Throughout this three and a half year nightmare, I grew up and became a much more positive woman, and I told everyone that I was going to kick this Adrenal Cancer’s butt! To keep my story short, I was diagnosed with Adrenal Cancer when I was 20 years old and I am now 25 years old! I had been on Chemo since November of 2007, and in December of 2010 I was told I could stop my chemo because I AM NOW CANCER FREE!

 

 

Diana Hart. - Glastonbury, CT

My brother Derrick was diagnosed August 2010 with ACC at the Smilow Cancer Center at Yale. I remember thinking as the doctor walked in after my brothers 3 hour surgery- if I really smile hard and I am really positive surely he will tell Cindi (my brother's wife) and me that all is well and the benign mass was successfully removed. But as the surgeon walked in, and I smiled, he didn’t. I knew. I remember looking at my sister in law and she was sort of stoic. I, on the other hand, remember my mind spinning. I wondered why I didn’t realize we were at a cancer center, not just Yale. I wondered why the subject of cancer was not fully discussed prior to this. But all that really mattered was we were told with 90% certainty my brother who was 48- with a 6 year old and 8 year old- had Adrenal Cortical Carcinoma. So that was the day our journey started. After hours, even days of frantic research, we found Dr. Gary Hammer at the University of Michigan. I have said before, that we are lucky - I know this is ironic and my brother may not even agree with that statement because no one with cancer is lucky. But my brother had an amazing surgeon who had done a little research prior to his surgery. He knew NOT to biopsy the tumor. He removed it with clean margins. My brother was diagnosed stage 2. We understood he needed to radiate the tumor bed, and he did 26 rounds, he knew to take Mitotane and did and has handled it will and in therapeutic level. And the most lucky of all… he has reached his two year milestone with no reoccurrence. So, in a strange way, for having this terrible cancer, he is lucky. The path of an adrenal cancer patient can be very different that Derrick's. The key is to try to catch it early, but it usually doesn’t present itself until stage 3 or 4. The prognosis and treatment is very different in this case. The research was very limited even as recently as 3 years ago, but it is advancing. Not fast enough, but good things are going on. The need for funds is at a critical point. We stated a group called " A Hart's Desire to cure ACC", my brother and Sister in law had a boat called " A Hart's Desire" and that is where the name came from. We have raised over $200,000 for Dr. Hammer over the last two years. We need to make that closer to $1Million so ACC C.U.R.E. is a great way to keep the funds coming in. Thank you to the Gannon family for continuing the fight to raise money to put an end to this horrible disease.