determination of primary site of NET

Welcome @rebecka93, I'm sorry to hear that your son has been diagnosed with NET. I'm sure it has been a long a challenging road to get here.

In another discussion @davidclark asked a similar question:
- Can a second Neuroendocrine tumor appear or is it always metastatic? https://connect.mayoclinic.org/discussion/neuroendocrine-metastatic-tumor/

I'm tagging fellow NET members like @hopeful33250 @elm60 @terryabk @maya8238 @triveraderubio @margreet @skkirby @phyllisden @monkey5333 who may be able to share their experiences with testing, determining the location of the the primary NETs and checking for metastases.

You may also be interested in this related discussion:
- Neuroendocrine tumor: What tests are used for diagnosis? https://connect.mayoclinic.org/discussion/neuroendocrin-tumor/

Rebecka, is your son seeing a NETs specialist?

Hi Colleen, thank you for your kind words. We are currently trying to get him an appointment with a NET specialist in Portland, OR; Dr. Hagen Kennecke. He lives in far northern CA, near the OR border, in a very rural area (but is awaiting a work transfer to the Salem area).

Hello @rebecka93, I would like to join Colleen, @colleenyoung, in welcoming you to the NETs discussion group on Mayo Clinic Connect. I can certainly understand your concern for your son and also the questions that you have regarding this rectal NET that has been found. I have had three surgeries for NETs in the upper digestive tract and I realize the importance of finding the best specialist to diagnose and treat these rare tumors.

I would think, as you do, that it is important to know if this is a primary tumor or metastasis from another primary. As Colleen mentioned, seeing a NET specialist is really important in obtaining a correct assessment and developing an effective treatment plan. As you undoubtedly know, NETs are a rare form of cancer and not every oncologist is equipped in treating them.

I see that you have one referral in your son's area. If you would like to find other NET specialists nearby, here is a list from the Carcinoid Cancer Foundation (CCF) that shows specialists throughout the U.S.

–Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
Here is a Connect discussion regarding the latest scan developed for finding NETs:
--68 GA Dotatate PET
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
The first post, describing the scan, was written by a Mayo radiologist.

How is your son feeling? Does he have any symptoms of carcinoid syndrome?

Dear Hopeful,
Thank you so very much for your message! I appreciate the links for the NET specialists and the 68 GA PET scan. That is the test that I believe he needs to have done. I'm so sorry to hear that you have had 3 surgeries for this condition. How were your NETs discovered? Did you have symptoms? How did the doctors know if the tumors found were primary or not? Mike doesn't have any carcinoid syndrome symptoms. He does have several other serious digestive conditions, and we are wondering if they may be connected to undiscovered NETs. Thank you again and I hope you continue to be well!

According to the article “Multiple Primary Tumors Over a Lifetime” on CancerNetwork.com, “A cancer of a different site and histologic (microscopic composition of cells and/or tissue) type than the original cancer is considered a separate primary.” So there’s really no way to determine if another site is a new primary tumor or a metastasis without some type of testing.
One of the best diagnostic tools for neuroendocrine tumors is the Gallium 68 Dotatate for non-resectable lesions. After eleven years of multiple diagnostic tests that never showed any tumors, I had a blockage in my small intestine in 2018 that was a neuroendocrine tumor (along with multiple others). Another one occurred in 2019 in my large intestine. In 2020 I had a Gallium 68 Dototate scan at Mayo that showed multiple lesions scattered throughout my body. In 2021 I went through PRRT treatment there. So the tumor in my small intestine is considered the primary tumor with the rest being metastasis (confirmed by the scan at Mayo).
I’m very sorry to hear that your son has had this diagnosis. These types of tumors are generally slow growing, and due to advances in diagnostic testing, they are being found earlier. And they are continually finding new treatments. But it’s still considered fairly rare so not all doctors are familiar with them, so finding someone who is, is important.
It’s a scary diagnosis so getting educated and finding support is important. So good for you for connecting with this group. And don’t forget to take care of you, too.

Wow, sounds like your son has had a really rough go. I’m sorry to hear that anyone has to go through this. My first suggestion would be, which it sounds like you’re doing, is find a NET specialist or experienced oncologist. That physician should be able to refer you to any other specialists he may need to see that are experienced with NET as well, such as gastroenterologist, endocrinologist, etc.. Then, I’d advise you to then get a second opinion! NET is my second rare cancer, and I was given some very bad advice and guidance with my first cancer. The oncologist he’s going to see may be able to refer you to another specialist for a second opinion. I’ve had oncologists get fuming mad because I was seeking a second opinion (I didn’t see him a second time) and I’ve had some offer to refer me to someone for a second opinion. If it’s difficult finding a specialist with NET near you, my experience has been specialists at the big cancer centers will work closely with your local oncologist. I live near St Louis and we have several cancer centers and one fairly well known center, which treated for my first rare cancer. I also saw specialists at MD Anderson. It turned out that my physicians shared several patients and actually knew each other. It’s a small world in the rare cancer community. When I was diagnosed with NET, I immediately reached out to my oncologists (whom had released me from their care, 10 years post treatment). They both got me in immediate contact with a NET specialist at their centers, whom, as it turned out, knew each other. It was quite reassuring having the added opinion to help me know I was on the right track.
Next, I would encourage you to join LACNETS.org. It’s another wonderful resource for NET patients and caregivers. They frequently have podcasts which can be easily viewed after the broadcast. My experience has been the specialists that take part readily answer questions and many offer their contact information in case other questions arise later.
Best of luck to you and your son as you traverse this new territory.

Hi Phyllisden, thank you very much for your compassion and for sharing your experiences. How awful that you went through eleven years of illness and testing before the tumors were discovered. But it sounds like you are in excellent care now. It sounds like the Mayo Clinic is the best place for diagnoses and treatment of this rare cancer. I hope you continue to do well!

Hi AngieT, thank you very much for your advice and for sharing your experiences. I can't imagine how difficult having TWO rare cancers must be! Doctors should be supportive and encourage second opinions, and never add to your stress. I'm glad you have found the specialists that you obviously needed! And thank you also for the info about LACNETS.org.; I appreciate any and all new information! I hope you continue to be well!

Hello @rebecka93

I appreciate your comment and questions. To answer your questions:
No, I never had any symptoms, the NETs were found during a routine upper endoscopy for other digestive issues, which was 20 years ago.

It is felt that these NETs were primary and that the previous surgeries might have left some cells in the area (all the NETs were found in the same location).
My other lab tests (Serotonin blood levels, 24-hour-urine) do not indicate any carcinoid activity and I have no carcinoid syndrome symptoms. I'm nearing age 75 and have chosen not to go through additional testing unless new symptoms or problems appear.

Given your son's age and previous digestive tract problems, I hope that he is able to see a NET specialist. Here is another link to lab tests that are used for diagnosis and follow up which might be helpful to him. This is from the CCF website as well:
--Diagnosis and follow up
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/
I hope that all goes well for your son. Will you post if you have other questions?

To @phyllisden @terryabk @rebecka93

Just a suggestion as you post:
I wanted to let you know that it is always best to begin your post with an "address". By address, I mean use the member's screen name (as I've used yours at the beginning of this post). Include the "@" along with the name. By using this format, the recipient will get a notification that you have responded to them. Otherwise, the response might not be noticed.