Possible new tumor: If NETs is back, can I go to Mayo Clinic?

Posted by sadragliz @sadragliz, Mar 22 9:55am

If my NETS is back, can I go to Mayo in MN for chemo treatments?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Turkey, Volunteer Mentor | @tomrennie | Mar 29 12:22pm

@sadragliz
Here is a link to pursue treatment at Mayo Clinic.
http://mayocl.in/1mtmR63

Turkey, Volunteer Mentor | @tomrennie | Mar 30 9:34am

@sadragliz Did the link work for you? Do you have any questions?

sadragliz | @sadragliz | Mar 30 1:19pm

In reply to @tomrennie "@sadragliz Did the link work for you? Do you have any questions?" + (show)

@tomrennie no it did not, sorry

sadragliz | @sadragliz | Mar 30 1:23pm

In reply to @tomrennie "@sadragliz Did the link work for you? Do you have any questions?" + (show)

@tomrennie It works lol thank you.

Colleen Young, Connect Director | @colleenyoung | Apr 2 8:04pm

In reply to @sadragliz "@tomrennie It works lol thank you." + (show)

@sadragliz, have you had further testing to confirm or rule out the possible new tumor? How are you doing?

sadragliz | @sadragliz | Apr 4 1:50pm

all I had was a CT of lungs which showed no new tumors. Doctor said we will wait and see. I think I should have a PET scan, but I do not know. CgA is 97 from 83.

lindabees | @lindabees | Apr 5 11:03am

In reply to @sadragliz "all I had was a CT of lungs which showed no new tumors. Doctor said we..." + (show)

@sadragliz A GA-68 or CU-64 dotatate pet scan is pretty much standard screening for neuroendocrine tumors. If your tumors have the proper receptors (the majority do, though some do not) these net specific pet scans will identify them anywhere in the body. This is important information as it shapes the treatment plan your doctor will come up with. If you're not already seeing a net specialist for monitoring, I would highly recommend doing so and Mayo is one of the best - any of their campuses.