My husband was diagnosed with Synovial Sarcoma within the past three weeks (this is from initial uncovering of masses, to needle biopsy to pathology to diagnosis). We had our first meeting with an oncologist this past Monday, and are going to be seen by specialists at the University of Washington on Tuesday morning. What I have heard is the UW is one of the best in the country, and have read that many of the specialists in the Sarcoma clinic are so dedicated to fighting this vile disease and have been awarded several research grants. All good signs I think? The reason for my post is that I am just not even certain what to be looking for or asking right now, and any advice that anyone can provide to me as it relates to 1) Knowledge and experience in treatment at UW and the Seattle Cancer Care Alliance and 2) information on participation in clinical trials vs. standard treatments etc. We want to be sure we are making the right decisions about treatment, and have to rely on the information the specialists are providing, knowlege and information, and instinct.
Just for some context, my husband is 47 years old and in excellent health. The only reason this was uncovered was we went to Urgent Care for something completely unrelated, had a chest x-ray and uncovered a mass on his lung. He has two masses on his lungs, one 13 cm and one 5 cm as well as smaller nodules as uncovered during the CT scan. Additionally, after a PET scan, another tumor was uncovered near his pelvis, not as large as the others.
Any information is appreciated. While I am researching as much as I can, I'm trying to feel "armed" when meeting with these doctors. Knowlege is power and ignorance is never bliss :-)
Thank you in advance for your replies. I am so thankful this forum exists!