Hello @grysel25, I haven’t been able to find anyone in the forum who has the same diagnosis. I’m hoping some new member will see this and be able to join in to share their experience with you.

From what I’m reading it does sound as though your current oncology team came up with a firm diagnosis. When dealing with a rare cancer, it can take several weeks or months to narrow down the possibilities. So don’t be too quick to dismiss your current team of doctors.
I think you have an appointment this week with your doctor. It will be good to hear what they have to say about treatment. Maybe you’ll feel more comfortable with the plan.

However, it never hurts to get a second opinion when possible so I gave you the information for Mayo Phoenix in the previous reply. Usually you’ll hear back from them within 3-5 business days.

But I’m here for you anytime. When you see your doctor and you get a treatment plan, we can talk more then, ok?

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