Neuroendocrine tumor: What tests are used for diagnosis?

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?

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?

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.

I have advanced metastatic paraganglioma since 2018. In early 2019 was initiated on Sandostatin injection intramuscular every 4 weeks and not long after also Zometa infusion. Now on Exgeva because progression of bone matastasis. My oncologist says good chance this year they will add Temozolimide to my regimen. I heard there's some clinical trials going on where they have added Olaparib with the Temozolimide and are seeing good results so my Oncologist is looking into this. He's also mentioned PRRT but wants to save that in case I start to show rapid progression which right now, thank you Lord, isn't happening. The PRRT he mentioned is called Lutathera which uses Lu 177 Dota tate that is directly absorbed by the cancer cells where the radiation is released. Hopefully many years will pass before they decide I'm ready for PRRT as I have read the treatment is quite toxic and it is a long infusion, your at the hospital most of the day. Good luck to everyone you are all in my prayers

Hi there-

I am so glad to hear that your GI doctor is listening to your concerns and is being proactive. I am sorry your Oncologist disappointed you. I will keep you in my thoughts and prayers as you progress through your various tests. Here if I can help or encourage you in any way.

Special Blessings,
Sherry

My surgeon suspects that I have a carcinoid tumor in my intestine and is going to do a Octreotide scan to confirm. Has anybody had any experience with this type of scan?

Hello @monkey5333 and welcome to the NETs discussion on Mayo Connect. Yes, I have had the Octreotide scan several years ago. It is somewhat outdated now as there is a newer scan available referred to as
– 68Ga DOTATATE Positron Emission Tomography (PET) Now at Mayo Clinic
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/

If you read the opening information, written by a radiologist at Mayo Clinic, you will learn how this test is more helpful in finding NETs than the previous test. If the clinic you are being seen at does not have this scan, you might inquire about another clinic in the area which might have it.

You mentioned that your doctor is trying to confirm a NET in the intestine. Have you had other tests, biopsies, and/or symptoms that have led him to this conclusion?

Yes I am actually not at a clinic but a hospital. They have done a CT, ULTRASOUND and my surgeon saw something on the CT that made him suspicious in my bowel. He is doing an colonoscopy and endoscopy but doesn’t think he can reach the tumor. He wants to do the scan to identify that it is a NET and any other anomalies that may exist. My pancreas was also shriveled. I came in because of a pain crisis. Any info you can share would be greatly appreciated. The pain was in my abdomen extending around to where my right kidney is located and it was excruciating.

Hi what imaging test is given to check for NETS?

I had PRRT at Mayo in Phoenix in 2021 due to inoperable NETs scattered throughout my body (had already had two surgeries resulting in the loss of 21" of my intestines). I had an unusual reaction (vertigo, vomiting, etc) to the first infusion so they decreased the dosage to half for the next three with few side effects. I had a Gallium 68 Dotatate PT/CT scan in March 2022 and my condition is considered stable. Were things to change, I would not hesitate to do the treatment again.
However, everyone is different and so will respond differently. And it's a matter of personal choice as to which treatment you choose.