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Neuroendocrine tumor: What tests are used for diagnosis?

Neuroendocrine Tumors (NETs) | Last Active: Feb 17, 2023 | Replies (37)
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@nwilson03

Hi my mom has NET in her uterus that also mastiszed to lungs. I am sitting next to her bed right now at Orlando health and she saw a hematologist oncologist that recommended chemo. They put a port and chemo later today. I’m so scared because we came in because of pain not knowing
G she had cancer and here we are 15 days later about o get chemo. Do you think we should have had PRRT instead?? I tried to plead with my sister to transfer mom to Mayo Clinic but she felt she trusted these drs. I’m so worried. Did you have chemo?

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Replies to "Hi my mom has NET in her uterus that also mastiszed to lungs. I am sitting..."
Teresa, Volunteer Mentor | @hopeful33250 | Jan 20, 2023

Hello @nwilson03,

I so appreciate the concern you have for your mom and your wish to see her get the best care possible. I understand your wanting her to be seen at a facility like Mayo Clinic where there are NET specialists. As you and your sisters probably know, NETs are a very rare type of cancer and are best treated by a NET specialist. Mayo Clinic does have some great NET specialists. If you would be interested in having a consultation (either in-person or virtual), here is the link that you can use to begin the appointment process,
http://mayocl.in/1mtmR63
You asked about PRRT. This is the latest chemotherapy that is being used to treat NETs and for some people it is very effective. Some of the Connect members have had this treatment with good results. You might find it helpful to read about their experiences in the following discussion group,
– Interested in hearing people's experiences with PRRT https://connect.mayoclinic.org/discussion/prrt-treatment/

Has your mom already had surgery for the cancer in her breast and/or uterus?

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phyllisden | @phyllisden | Jan 20, 2023

I have not had chemo - PRRT (Peptide Receptor Radionuclide Therapy) is NOT chemo. It is a targeted treatment using radioisotopes that take the drug Sandostatin (Octreotide), a laboratory-made version of the hormone that binds to somatostatin receptors on neuroendocrine tumors, straight to the tumor via an infusion. It is given 4 times, 8 weeks apart.
"When injected into the patient's bloodstream, this radio peptide travels to and binds to neuroendocrine tumor cells, delivering a targeted high dose of radiation directly to the cancer cells."
This treatment has only been approved by the FDA for use in this country only since 2018, and Mayo was a site for the trials. I went to Phoenix as it's the closest to me, and I cannot say enough positive about them.
However, each case is different and some patients do receive chemo depending on their particular situation. NETS are very rare so it is important to find an oncologist with knowledge and experience in dealing with them. Do your research, ask questions, and then help the family help your mother make the right decision for her. And take care of yourself during this challenging time.

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