← Return to Spot on tail of pancreas: Going to Mayo for second opinion

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@markymarkfl

@mikalleb , Is anyone testing your CA19-9 and/or CEA levels? Did anyone order a germline (hereditary) DNA test such as Invitae?

If you could get CA19-9 + CEA now and in 1 then 2 months, you would have the beginning of a trendline and baseline knowledge of your normal values, all ready to re-assess coincident with your MRI. Multiple sources of info to help validate or invalidate the others.

Knowledge of germline mutations may identify that you're in a high-risk category, which might qualify you for higher priority, more advanced, more frequent monitoring. A mutation, plus my being an immediate blood relative with PC, has gotten my brother into a much more aggressive monitoring program.

If $1000 out of pocket is affordable, you might consider self-ordering the Galleri test from Grail, despite all the caveats associated with it.

It would be hard for me to sit back for two months with no testing, treatment, or data gathering going on. We knew from genetic testing and prior surgery that I was at increased risk, but two delayed actions in my journey definitely sent me down the less desirable road. I don't mean to worry you, but I'm worried for you!

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Replies to "@mikalleb , Is anyone testing your CA19-9 and/or CEA levels? Did anyone order a germline (hereditary)..."

I must agree. It’s hard to believe that at Mayo, of all places, would have a two month wait for an MRI.

Developing a baseline is very important. Additionally, have you had a full AB scan? “Surprises”months later are not fun.