US - Ohio

Ask a specialist for a “standard of care” letter to your primary oncologist for the next treatment options. Example: after radiation failed, my mom’s specialist made a case for chemotherapy that my mom’s primary doctor thought would not work. It bought my mom another 6 months so she could eventually find a clinical trial that, in fact, did work.

Doctors and hospitals have different access to clinical trials and new therapies. In my mom’s case, I had to find a 2nd opinion from a Lymphoma specialist at a well-respected treatment center who believed that a 79-year-old patient deserved and could tolerate more aggressive treatment when the first line treatment failed.

Take care of yourself. Make a point to put it in your calendar to take a walk, get an ice cream cone, or a massage. Even if you don’t feel like it, force yourself to take a few minutes a day to pro-actively take care of yourself.

Break down your fears into small enough pieces so that they are manageable. For example, if I’m afraid my Mom is going to die, then I ask, what exactly about that do I fear the most? Answer: Living without her memories of our family. Solution: start a journal and co-author with her to capture her story in words and pictures.

Keep the peace. While I stress getting that second, even third opinion, keep the tone of all the interactions between specialists as calm and considerate as possible. You are building a team around your loved one. Your primary doctor still has the discretion (power) to say “no” and make it difficult for insurance to cover additional treatment.