Sure, and we probably all agree that these are personal decisions. If the OP wants to dedicate his life to working on this particular problem, great. Maybe he makes a meaningful contribution. Maybe he just helps his partner make better informed medical decisions. Even if you plan to follow standard of care, doctors often present choices that balance risk vs result.

Also, doctors split their time among patients and their various diseases. You, on the other hand, can focus your study on your disease. If you have a scientific mind, you can become an expert with enough study.