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Move fast!

Get the Invitae germline DNA test done asap by anyone who will order it to see if family mutations increase the risk of pancreas (or any other) cancer. Knowledge of this may speed up access to treatment as well as help inform an optimal treatment.

Get a CA19-9 blood test every 2 weeks until more conclusive data (from imaging or biopsy) is in.

Try to get a pancreas-specific MRI (MRCP) done asap at a pancreatic cancer center of excellence.

Keep a very close eye out for jaundice; yellowing of skin, whites of eyes, more itching than usual, darker than normal urine, lighter stool color, more frequent diarrhea, increases in blood sugar level.

If you can get a Guardant 360 blood test, that can also detect somatic (non-inherited) mutations if you have cancer cells present.

The Galleri test from Grail is another liquid biopsy (DNA-based blood test) you can "self-order" if you call Grail, speak to one of their counselors, and pay them $1000. It's not super-sensitive to pancreas cancer and it's not FDA appropved, but if it does return a positive, it gives you a lot of ammo for moving to the front of the line for treatment.

It can be challenging to get your appointments scheduled at a center of excellence. Some won't even see you until you've been diagnosed w/ cancer by someone else. If you can get a good gastroenterologist on board, you might be able to get priority referrals to good centers.

Wishing you the best!


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Replies to "Move fast! Get the Invitae germline DNA test done asap by anyone who will order it..."

Hi markymark,
What Wonderful advice.
I thought I was informed.
You are absolutely right.
When you have all these tests conducted, it absolutely helps in "YOUR ARSENAL" because you have helped the physicians in doing their job and they will see that they are dealing with an educated patient advocate. Doctors treat you with more respect when they are held at a higher bar. Thank you so much. I took notes and will keep this information in my medical binder.
Take care,
Keep advocating for all of us.

I didn’t see a germline panel for the Invitae- which test is for the pancreas?