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Tips about preparing for my second opinion appointment at Mayo
I live in Panama (a US citizen , now retired) and have been diagnosed with NETS after many tests and biopsy. I have had 5 shots (monthly) of ochreotide and so far the liver cells (metastatic) have grown very little. I am coming to the Florida Mayo Clinic for a second opinion and see if there are any advances towards a cure. Currenly the shots are hormone blockers and its a treatment (so far working) I recently had a followup scan and wondered if it would be advisable to include it with the other portal (Panama Clinic) reports for the Mayo doctor to view or would they want to take their own. a new scan obviously would cost more and perhaps detain my visit. I'm trying to make flight arrangements and have not been given clear advice on when to schedule my return flight to Panama.
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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I recently had my first appointment with DR Starr
It is very important that he have your scans especially if you have a net pet and or the most recent
I’m in the watch stage currently. My net was accidentally discovered in September 2025 while having a calcium CT done
My nets are in my Right Lung Upper and Hilum. I’m super excited about the new facility coming to Mayo and the new treatment that will be available (2028)
Good luck. Let us know what you find out
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3 Reactions@maeve115, you’re right that Mayo Clinic’s travel service is very helpful in arranging travel plans and especially helpful if changes have to be made.
I think people who have been to Mayo Clinic in Rochester, MN would second your recommendations, including the Bunny cake. 🙂
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1 Reaction@maeve115
Ooops. The information I wrote was for Mayo at Rochester MN. however "Patient Travel Services agents can help patients and their families plan trips to any of the primary campuses (Rochester, MN; Phoenix/Scottsdale, AZ; Jacksonville, FL).
Assistance Offered: Services include flight reservations, hotel bookings (often with discounted rates at partner hotels), and ground transportation arrangements."
https://www.mayoclinic.org/patient-visitor-guide/travel-services
or you can check the individual Mayo Clinic website.
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2 ReactionsWelcome ahead to Florida.
I’m schedule for my first appt in Feb and haven’t received any info regarding how long to plan on staying. I’m driving from out of town. I was told by the specific department I could call them anytime to see, with any questions. I guess I’ll need to do this but a bit uncomfortable doing so. I also know the clinic has a “social worker “ dept but not sure what they are able to assist with. Sorry I can’t help . If I learn more I’ll post again. Blessings on finding treatment
🙏🏻🦋
Hello Mlassen1.
I've had 3 opinions from qualified oncologist and so far the best they can tell me is they are trying to slow growth and metatisis.
I just started my lanreotide injections regiment but only 2 months.
I have more than one tumor so they did not remove them.
Curious as to why they didn't surgically remove yours.??