Hi there and welcome,
My dad was diagnosed with a mediastinal mass 6.5cm X 5.8cm on August 7, 2018. Like you, I was feeling overwhelmed at the lack of current research and the research that existed lumped thymomas and thymic carcinomas together (to get a bigger sample size) added to my frustration and fears. I was hoping it was a thymoma, but learned it was squamous cell thymic carcinoma. This path was sent off for further analysis which took another 3-4 weeks to result, but was able to tell us how receptive it would be to immunotherapy. The chemo regimen of carbosplatin and taxol had just fair results.
What I learned through my dad's surgeon, at least in our case, was that de-bulking was not an option with his type of tumor. What we were told by the surgeon was that he would not even attempt to remove the tumor unless he was sure he could safely get all of it. This being an aggressive tumor, he didn't want to leave any of it behind. To determine proximity, a cardiac MRI was ordered to try to "see" if it had invaded or nested too close to vital vessels, like the aorta. The surgeon was hopeful he could do the surgery, but after reviewing the cardiac MRI he and his team felt the tumor was too close to my dad's pulmonary artery and innominate vein for him to attempt to safely remove it. His fear was to open my dad's chest via sternotomy only to realize he could not do anything or worse attempt surgery and have a poor outcome. A poor surgical attempt would simply delay treatment for 5 weeks and that's barring any more time due to surgical complications.
Since thymic carcinoma is rare AND aggressive form of cancer, he consulted with cardiologist reading MRI, oncologist, radiation oncologist and his surgical partners to make the safest decision and determined the best course of action for my dad. We ended up not having surgery, but did have chemo and radiation. My dad's tumor has not spread and after radiation was notably smaller. He has since been started on Keytruda every 3 weeks. The disease is currently stable and we could not ask for more.
I would definitely find a surgeon who was not eager to cut, but one that was thoughtful and understood this type of tumor, meaning since rare they will need to review and learn about this very rare cancer. Time is of the essence. I never appreciated all the considerations that have to made until we were knee deep. We were fixated on surgery, but know we went down the right path.
Please feel free to ask any questions. You are not alone and treatment options are getting better with options in immunotherapy.