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I have recently been diagnosed with my third neuroendocrine tumor

Neuroendocrine Tumors (NETs) | Last Active: Feb 13 1:37pm | Replies (45)
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@hunts1014

I read your story and pray you are doing well. How are you? How was yours removed?

My husband was diagnosed with this in Oct. 2024 and was removed during a routine Endoscopy. We have seen a local gastroenterologist, oncologist and both were not familiar with this tumor in this location therefore I went to MD Anderson in Houston TX. Unfortunately, I’m told there is nothing to do to prevent recurrence other than monitoring with an Endoscopy every 6 months for 3 years and then annually after that for rest of my life. Mine was a grade 1 well differentiated 7 mm tumor.
How were you monitoring your cancer when more tumors were found? Any insight you can share would be very appreciated?

How do you rate the care at Mayo Clinic as we were not thrilled with MD Anderson as we felt like a number there since my husband didn’t have an active tumor. We were told similarly to you in that they considered him cured but we are concerned about recurrence as we have read a lot about people having additional nets in their duodenum bulb after complete resection.

Thanks,
Kim

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Replies to "I read your story and pray you are doing well. How are you? How was yours..."
Colleen Young, Connect Director | @colleenyoung | Feb 9 8:18pm

@hunts1014, welcome. I'm tagging @hopeful33250 to make sure that she sees your questions.

I understand your concern about recurrence. If you would like to submit a second opinion at Mayo Clinic, you can request one starting here: http://mayocl.in/1mtmR63

Several GI NETs members here are Mayo patients, like @vanhauen @vinnie694 @markbrinkley and others who can share their experiences.

Hunts1014, which Mayo Clinic location were you considering?

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vinnie694 | @vinnie694 | Feb 10 6:41am

I was diagnosed with NET’s a little over 2 years ago . Very fortunate to have Mayo Jacksonville 1/2 hour away from our home. After careful review of all my scans, I met with their NET team.. In was informed at that time not to think of this as regular cancer cause if it was , with the amount of tumors on my liver it would be a whole different story.. I really didn’t have any symptoms and was not suffering from any loss of body functions.. His approach was not surgical, and he didn’t recommend Chemotherapy.. It was well explained. As treatable, not curable. I could go into my plan , but everyone has a different medical situation. I would always question what he was doing to what I’ve read here and other sources.. He always knew what I was talking about and was able to explain why or why not in my case.. I believed his advise was solely based on experience, and I felt very comfortable with his plan. he always welcomed my questions, which made me even more comfortable with this team.. Phone calls are returned and on my patient portal I always receive a quick response to all my questions. I hope you get all the answers you deserve, Best wishes on your quest for a treatment plan..

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Teresa, Volunteer Mentor | @hopeful33250 | Feb 11 7:19pm

Hello @hunts1014

My original lesion was found during a routine upper endoscopy. My first two surgeries were invasive with a resection of the duodenal bulb. They were 3-hour surgeries with a 5 to 7-day hospital stay.

As I live in SE Michigan, I have never been a Mayo patient, however, when the third carcinoid was found, I went to a well-known university medical center in Michigan. As this tumor, as well as the other two, was quite small ((small, 5 to 6 mm), they indicated that it could be removed by an endoscopy procedure. During this procedure, they also used APC treatment, as the lesion was flat and not easy to remove.

Much like you were told, I needed upper endoscopies regularly as a follow-up. My surgeries were in 2003, 2005, and then again in 2016. There has been no evidence of metastasis, and so I have not needed any further treatments. At first, my follow-ups were yearly, but now every two years.

If you are not comfortable with the information you have received, I would encourage you to get a second opinion. Mayo Clinic has NET specialists at all three of its locations. If you would like to get a consultation at Mayo, here is a link with appointment information. http://mayocl.in/1mtmR63.

It is important to be as comfortable as possible with any possibility of recurrence. There are certainly no guaranties with NETs, however, the more information you gather will be helpful.

I would love to hear from you again and know how you are doing. Will you post again with any questions or concerns?

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