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Initial imaging and tests; what to expect after initial NETs diagnosis
Neuroendocrine Tumors (NETs) | Last Active: 1 day ago | Replies (20)Comment receiving replies
Can you say which part of my results show/suggest that the tumor is "Samatostatin Receptive"? Is it this part: "Tumor is positive for synaptophysin."
Maybe I just need to be sure they noticed that in the information they can access in MyChart. If I just need to point that out for them to think that a PET scan is warranted, I could definitely do that. I'm not sure how different doctors feel about patients prodding the suggested tests and asking for certain ones. Any experience with that?
Replies to "Can you say which part of my results show/suggest that the tumor is "Samatostatin Receptive"? Is..."
@prairiezebra
A dotatate pet scan is specific for nets. That will tell you if any remaining tumors have receptors.
Mayo has an excellent net team. I would suspect that they want to start with the standard imaging you mentioned and then decide on the dotatate pet scan depending on those results. Perhaps they want to first see if there is any indication of any other tumors before they do the pet scan. Or it could be an insurance requirement before approval of a pet scan. Regardless, I would definitely suggest you ask about it at your appointment.
There are net specific organizations that will provide you with a wealth of information in preparation for your first visit.
http://www.netrf.org
has a patient resources section including a Newly Diagnosed section that will guide you in what to expect and questions to ask at your first appointment. There are also tons of informational videos.
Some additional advice: It sounds like you're being super proactive and that is great. Learn all you can about this disease before your appointment so you can make the most of it. Educate yourself enough to know if what any doctor tells you makes semse. Do not be afraid to ask questions
Be prepared to be your own best advocate regardless of the skill and knowledge of any doctor you see.
My husband sees the net specialist at Mayo Phoenix. The Mayo system is amazing! You'll be in great hands. Let us know how it goes.
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@prariezebra & fraaseo: Your diagnosis points to the cells being Samatostatin Receptive. Fraaseo points you in the right direction - be a strong patient advocate for your healthcare. It looks Iike you need a Gallium 68 PET scan ordered by a NET Specialist Oncologist documenting urgency to rule out NET Metastases. You have been given several peer experiences and helpful recommendations - you decide how you want to proceed.
Best health for you..