Has anyone used proton therapy? I was reading about it online for my dad. He has synovial sarcoma in the left lung. Primary and only location. It's pretty bad. They are doing chemo (past 9 months) and actually attempting to drain some fluid in his lungs today. The chemo was working, but then we took a break and the tumor grew, so back on the chemo train. Just curious about proton therapy since the oncologist said radiation would do more damage than good at this point, but I heard proton therapy is different. Sounds like the do it at MD Anderson.
When I was first diagnosed with synovial sarcoma in my neck (right parapharangeal space) I had a call from an unknown Doctor call me and tell me I must go to proton radiation to prevent damage to surrounding areas from the radiation. I had 2 young children and alone so it wasnt an option to leave them or financially.I now wish I could have been able to think more clearly about my choice.I live with many problems from the aggressive radiation on my head and neck.My tongue is still sore 19 years later everyday. My ability to speak and ongoing surgeries to inject filler in my vocal chords are just a few. I figure it beats the alternative. Proton goes directly to the cancer area.They only had it in 3 states in 1991 .
I’m assuming surgery isn’t an option? I also have SS in my left lung and we’ll have my lung removed on the 12th of this month. I know surgery isn’t an option for everybody, but was wondering if it was option for your dad.
Thank you! I appreciate the information! No, sonnut surgery isn’t an option. they would have considered taking the whole lung but the cancer is in the lining so they fear they wouldn’t get it all and the chance of reoccurrence is so high and the concern would be it spreading to the right lung and him being out of luck! So chemo it is and just exploring other options to discuss with the doctor.
Hello, I applied proton therapy for my synovial sarcoma of the neck. I consulted several clinics including MD Anderson, who advised against proton therapy. I decided to go with Florida Proton Institute and was blessed with the results. My surgery was at Mayo. The combined treatment was absolutely wonderful. Even though I had the greatest amount possible of proton radiation, my side effects are incredibly small in comparison to normal radiation. I highly recommend it vs standard radiation, but keep in mind it’s not for everyone. Proton therapy is a more exact application meant for areas where normal radiation can cause damage to surrounding organs and tissues and not everyone is a candidate. You can send your fathers records to the Institute and they can asses if he is a candidate or not. Please don’t hesitate to contact me if you need further information or help. God bless your father and all of you.
They will be taking not only my left lung, but the lining (I also have tumors on the inside lining), the tube leading into my lung, and all the lymph nodes in that area. Yes, if it comes back in my right lung, I am definitely more compromised and it will be a tough situation, but I am buying myself time and quality of life because I won’t have to be be on chemo (which I just finished). All my tumors are in my left lung and I will in essence be tumor free. If/when it comes back, we’ll be watching and waiting for it. I guess it’s a personal choice and I’m willing to take the chance of living with one lung for longer time. I hope treatments and therapy helps your dad, this is such a sucky disease. My surgeon was at MD Anderson for 31 years before going to Ohio State University, where I’ll be having my surgery later this month. You may want to get a second opinion on that surgery. I’m feeling very optimistic about it.
they would have considered taking the whole lung but the cancer is in the lining so they fear they wouldn’t get it all and the chance of reoccurrence is so high and the concern would be it spreading to the right lung and him being out of luck! So chemo it is and just exploring other options to discuss with the doctor.