1. < Neuroendocrine Tumors (NETs)
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Tips about preparing for my second opinion appointment at Mayo

Posted by mlassen1 @mlassen1, Jan 13 2:15pm

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.

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

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texashummingbird | @texashummingbird | Jan 21 11:07am

Prayers for all of us with NETs. I am new to this, and have just had my first appt. with Head & Neck Surgery in Houston back in mid December, with CT Angiogram with and without Contrast, and Blood work sent to the Mayo Labs in MN. Still waiting on second visit with surgeon, or what the team's game plan is for me. Apparently I have a slow growing Paraganglioma in my right neck, that was originally diagnosed by my dentist, oral surgeon, oncologist and PCP as an absess in my neck draining from the back right molar. Probably had both issues happening at the same time. Thank you all for your notes on your treatment, as it is a great help, and best wishes to all for good results.

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doonman | @doonman | Jan 21 5:11pm

Very happy for you! Excellent Gives everyone hope.

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Turkey, Volunteer Mentor | @tomrennie | Jan 21 8:11pm
In reply to @espelandmt2 "The explanation I got, is once you are stage 4, targeted therapies such as surgery and..." + (show)
Profile picture for espelandmt2 @espelandmt2

The explanation I got, is once you are stage 4, targeted therapies such as surgery and direct radiation (proton, histocripsy, Y-90, etc.) are like playing wack-a-mole. Unless there is an immediate life threatening problem that can be eliminated by surgery, it probably is not the best option. I too questioned why not surgery for about 9 years. Chemo and PRRT (Lutathera) are more effective at treating all tumors. I’m currently getting PRRT. Next treatment (2) is next week. Side effects have been far easier than Everolimus (last year) for me. I’m hoping it works well as I have lots of tumors, 50+ liver, lymph nodes and others. After 10 years of Sandostatin/Octrotide I’m doing well and feeling great. Wish you the best!

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@espelandmt2 I was diagnosed with a pnet that spread to my liver and bones in 8/2022. I was told surgery was not an option. The pancreatic tumor was blocking a vein. I was pretty sick. Did 13 cycles of captem, 28 days each, and everything shrunk in half. I was no longer sick and hiking about three miles a day with our dog. I have been on a lower maintenance dose of just capecitabine ever since. Everything is still stable. I feel fortunate.

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Teresa, Volunteer Mentor | @hopeful33250 | Jan 26 7:33pm
In reply to @kimberlybrunson "I recently had my first appointment with DR Starr It is very important that he have..." + (show)
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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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Hello @kimberlybrunson, and welcome to the NETs support group on Mayo Clinic Connect. You've provided some helpful information regarding seeing a NET specialist.

I see that you have recently been diagnosed with NETs in the lung. Since your diagnosis was found incidentally (as was mine), you probably were not having any symptoms of a lung/breathing problem. Is my understanding correct?

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kimberlybrunson | @kimberlybrunson | Jan 28 5:04am
In reply to @hopeful33250 "Hello @kimberlybrunson, and welcome to the NETs support group on Mayo Clinic Connect. You've provided some..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @kimberlybrunson, and welcome to the NETs support group on Mayo Clinic Connect. You've provided some helpful information regarding seeing a NET specialist.

I see that you have recently been diagnosed with NETs in the lung. Since your diagnosis was found incidentally (as was mine), you probably were not having any symptoms of a lung/breathing problem. Is my understanding correct?

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@hopeful33250
Yes no breathing issues. I have had a cough for many years but not extreme or anything

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Teresa, Volunteer Mentor | @hopeful33250 | Jan 28 7:54am
In reply to @kimberlybrunson "@hopeful33250 Yes no breathing issues. I have had a cough for many years but not extreme..." + (show)
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@hopeful33250
Yes no breathing issues. I have had a cough for many years but not extreme or anything

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@kimberlybrunson Has any treatment been planned for the lung NETs?

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