I am a 28-year old male. I was diagnosed with Cushing’s in November of 2003 after I went from 6’5″ 210 lbs. and 8% bodyfat to 6′ 3″ 225 lbs and 25% (I guess my back started curving making me shorter.) I had all of the classic symptoms of Cushing’s (you name it, I had it).
I had surgery in December 2003 to remove my thymus, the 8x5x4 cm tumor surrounding it, and 2 lymph nodes. It was deemed an atypical thymic carcinoid. I then underwent chemotherapy with Etoposide and Cisplatin followed by radiation therapy. All of my chemo and radiation doses were the highest that they have administered, I was told that since I was so young and that since I was an athlete in good health prior to the disease that I would be able to recover. I suppose they were right for the most part (I’ll get to that later). I continued to work and keep up my exercise routine during chemo and radiation. This I cannot stress enough, keep exercising as your body can handle it, it is the best therapy in my opinion. After about 2 months after my last radiation treatment, I was back to my best shape ever and I was enjoying life as much, if not more than pre-diagnosis.
In December 2004, I developed radiation pnemonitis from the high dose I received. Apparently only about 2% of patients receiving chest radiation develop this. This only made sense since I happened to get one of the most rare types of cancer, so I took it in stride. My radiation oncologist put me on high doses of prednisone (60mg/day for the first two weeks and tapered down for the next 4 weeks). Despite my reservations to taking a steroid after I went through Cushing’s, I went along with it.
By the end of the treatment (February 2005) I had gained 10 pounds and lost a lot of muschle and strength despite my regular exercise program. I consulted my radiation oncologist and she told me it would go away in two weeks. Another 10 pound weight gain and 8 weeks later (April 2005), I consulted my regular oncologist, he did a CT scan and PET scan and checked my cortisol (no ACTH test for some reason, only makes sense to me check that since that is what my type of tumor produces). CT and PET came back negative and he told me that the Cushing’s would go away in two weeks. Another 5 lbs. and more of the usual Cushing’s symptoms, I consulted my family doctor that diagnosed me the first time 2 weeks ago, he ran all of the blood tests (CBC, electrolyte, ACTH, Cortisol) and ordered another CT/PET scan. He seems to understand this disease better than anyone. CT was negative, but the PET scan shows “something” in my chest.
I have an appointment with my oncologist this Friday (July 15th) to review my PET results and discuss with my surgeon and oncologist what steps we will take next. I have one theory regarding the use of corticosteroids. My doctor didn’t agree the first time, but he may think differently now. I received 2 cortisone shots in my elbow for tendinits (I was pitching a lot that summer and trying out for some MLB baseball teams at the time), 3 months later I was diagnosed with Cushings’s. This last time I I recieved high doses of prednisone and 3 months later was diagnosed again with Cushing’s.
I think there is a correlation here. I don’t know if corticosteroids help the tumors grow, or if suppresses the immune system so much to allow them to grow or what, but I beleive there is a correlation. Either way, I will never take a steroid again. This is all very frustrating as anyone who has lived through this knows. It is hard on the person living with it and everyone that cares for that person. Personally, I am surprised that I still have a loving wife, my job, and my sanity. There is light at the end of the tunnel though. I’ve made it to the light once and became a stronger person for it and I’ll make it again.
Update: Damon lost his battle against thymic cancer on October 13, 2007.