Today I started being my own advocate, by asking questions. I told my oncologist I wasn’t satisfied with the explanation he provided for why he didn’t order the Gallium 68 scan. I asked that he refer me to a nutritionist. Finally, why was an octreotide scan and 5-HIAA test never ordered.
Why order a PET scan to search for other tumors when he said the scan wouldn’t reveal anything. Why waste resources when you know the results will be inconclusive?
Its unfortunate when it feels like your oncologist ignores your requests and questions. Its not very pleasant when you find holes in the data given to your by your health care provider and its scary when you are losing faith in the treatment you have received.
To be fair we’re all human, we can only know what we know. People can only do what they can do. I could sit here all day wondering if things would’ve been different if someone suggested to do this or that, but if things were different, things would be different. There are moments when I get angry, but unrefined anger doesn’t do anyone any good. Anger filtered through a lens of critical analysis can give us the outrage we need to change something.
I have initiated change, I asked the right questions but now I feel depleted. It took so much to stand up and ask my questions that I don’t have the energy to hear the answers.
I’m not happy with my doctor, that doesn’t mean he’s a bad doctor or person. Simply put we just aren’t a good fit right now. I assume that he is a competent, friendly and a passionate person, but I need more. I need a second opinion from someone who specializes in NETs.
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