New to NET’s

Posted by pjsheridan2022 @pjsheridan2022, Jun 21 1:52pm

Went in for a healthy heart check and during ultrasound they saw spots on my liver. Had in quick order CT, biopsy, bone scan.
Confirmed Neuroendocrine that originated in mesentery with multiple liver and lymph metastasis. Well differentiated.
Was put on Ocerotide in April 22.
Very tired any recommendations?
Back to Mayo Rochester in August for a Dotatate CT.

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

Hello @pjsheridan2022 and welcome to Connect. I am glad that you found our discussion group on NETs. We have several members with a diagnosis similar to yours. I'm guessing that this was an incidental finding, meaning that you had no symptoms, a CT scan for something else revealed the NETs. Is that correct?

I also had an incidental finding of NETs during an upper endoscopy for GERD and a hiatal hernia. I certainly understand the concern this raises when you've had no indication that anything was wrong. Many of the Connect members in this discussion group were diagnosed and were certainly not expecting it.

On the first Thursday of each month, Mayo Clinic in Florida offers a virtual NETs support group via Zoom. It starts at 5:30 and lasts for about an hour and a half. I would encourage you to attend the next meeting in July. You will need to register in advance. You can contact Mayo Social Worker, Candace Porter. You can let her know of your interest by posting to her at @candacep. She will send you information on registering.

You said that you are tired. Do you have other symptoms as well? I'm thinking of symptoms like nausea, diarrhea, difficulty eating, weight loss, etc.? Since you said, "Back to Mayo Rochester in August for a Dotatate CT" I'm guessing that Mayo was the diagnosing hospital?

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Eating well but have lost around 12 pounds since start of Ocerotide in April.
In retrospect did have flushing on occasion prior .
Soft stools but not diarrhea.
Local oncologist diagnosed and 2nd opinion at Mayo confirmed.
Heart ultrasound during a healthy heart check got a view of the spots on liver so it was via that and follow up CT and biopsy that it was confirmed.

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@pjsheridan2022

Eating well but have lost around 12 pounds since start of Ocerotide in April.
In retrospect did have flushing on occasion prior .
Soft stools but not diarrhea.
Local oncologist diagnosed and 2nd opinion at Mayo confirmed.
Heart ultrasound during a healthy heart check got a view of the spots on liver so it was via that and follow up CT and biopsy that it was confirmed.

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@pjsheridan2022

I appreciate the added information. Have you mentioned the weight loss to the doctor who prescribed the Octreotide? If not, this might be a good step to take at this time.

I would like to invite some other members who have a similar diagnosis to join this conversation, @kjstein, and @laurell410

@psheridan2022, will you be able to join us at the July meeting of the NETs support group via Zoom? We will meet on the first Thursday of the month. It is a great way to learn more about this disorder and how others are dealing with their diagnosis.

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