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Has anyone chosen the Watch and Wait and regretted that choice?

Neuroendocrine Tumors (NETs) | Last Active: May 24, 2023 | Replies (42)
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@hopeful33250

@t26

I appreciate your comment! Learning as much as possible about this rare cancer is important. Getting more than one opinion is also the best way to go about making decisions.

I would just add that getting these other opinions from a NET specialist is important. Mayo Clinic has NET specialists in all three of their locations. Information about appointments can be found at http://mayocl.in/1mtmR63. In person or virtual appointments can be quite helpful.

Also he Carcinoid Cancer Foundation has a website with NET specialists throughout the world. Here is the list,
--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

Did you personally get 2nd and 3rd opinions, @t26

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Replies to "@t26 I appreciate your comment! Learning as much as possible about this rare cancer is important...."
t26 | @t26 | Apr 13, 2023

My Journey of doctors and second opinions
- Local Community PCP ordered Ultrasound because of Liver pain..bingo
- The Cleveland Clinic Foundation (Dr Alok Khorana)..only 3 months there
Only treatment was some Sandostati shots
- Second Opinion through "Best Doctors" from Duke (Dr Morse, NET Specialist) ....Confirmed it all
- University Hospital Health Systems (Dr Amr Mohammed - NET Specialist Oncology) ...CapTem Recommendation
- Eric Liu, Rocky Mountain Cancer Center NET Surgeon
Captem Recommendation and not a surgical candidate uopn diagnosis ..to many liver mets
- Dr Nutter Consult, the Nutting Clinic..was considering y-90 but did not
- Early 2022....Cap/Tem worked great !! Dr Liu says I can get debulked
- University California San Francisco ( Emily Bergsland, NET Specialist Oncology) but also met with interventional radiology
Surgical consult which they did not recommend because still excessive tumors .....they liked bland embolization
- Universiy of Iowa, James Howe, Liver Surgeon....said he could do the surgery.
- The Mayo Clinic ...Dr Thor Haldafarson ( NET Specialist - Oncology) and Dr Cleary, Surgeon liver and pancrease...yes surgey

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