New Diagnosis: husband's labs are all indicating NET

I do have an appt with my oncologist this week and I will ask him to refer me to a NET specialist in Milwaukee. It’s a 2 hour drive but I think it’s worth it. There are 2 specialists in Milwaukee and they are the only ones in the state of Wisconsin.

That sounds like a good plan, @jocat74. I look forward to hearing how the appointment goes next week, Keep posting with questions or concerns, and let me know about your referral to a NET specialist.

Connect is a great way to find companionship while on this NET journey.

Was it a PET Dotatate scan he had? That's the one my Doc uses to find or check for changes in tumors. I also had a biopsy to verify that the spots on my liver were indeed NETs; then they can "grade" the tumor at the cellular level. I just have to do Octreotide shots monthly to control them the past 2 years. Traveling to NET tumor specialists is a great idea. I did a little research and found this: "A MIBG scan is primarily used to detect neuroendocrine tumors like pheochromocytomas and paragangliomas by looking for tissue that takes up MIBG, while a CU PET Dotatate scan, which uses copper-64 labeled DOTATATE, is considered the gold standard for detecting most neuroendocrine tumors (NETs) by targeting somatostatin receptors, generally offering better sensitivity and more detailed imaging compared to a MIBG scan; making the CU PET Dotatate scan the preferred choice for most NET cases, especially when looking for smaller or more widespread tumors." My Doc is at the Fred Hutchinson Cancer research center in Seattle.

Hi anyone with NETS recurrence? I had laparoscopy surgery to remove the tumor from my small intestines, and several sounding lymph nodes 2 of which were diseased. The diseased metastasized to my mesentery affecting two nodules. One mesentery nodule was removed, but they were unable to reach the other one. A month after surgery, i had a full body pet/ct scan done where they used gallium 68 to trace any Nets throughout my body. The only hot spot was in my pelvic area, the unreachable nodule. The also notice that compared to a previous scan, the nodule was shrinking. Fast forward to day, I've been on Lanreotide injections since February 2024. I recently had a full body scan, this time they used fdg injection. The report findings revealed a several nodules in my buttocks. I suspect these are from the shots. The scan also showed that the unreachable nodule was no longer visible. However, a new nodule measuring 1.4 cm was found in the mesentery fat slightly cranial to the old, and labeled it as a non abnormal update. I don't know what this means. Has anyone ever had recurrence come back so soon? I have an appointment later to to day with the oncologist to go over my results.

Rogerstc, I don't think you've had a recurrence per se. I think you have Neuroendocrine cancer and slight changes in PET scan results are not uncommon and are expected. The fact that you are on Lanreotide in this situation points to the fact that you have NETs. Understand that the findings of these scans often describe all kinds of things in addition to your cancer. When you have a PET scan, you also have a Cat scan which is the roadmap if you will for the PET scan. The people that read my PET scans talk about kidney stones and fatty liver, spinal wear, etc in addition to any NET tumor changes. It seems that you have very little cancer on board? If your version of NETs is well differentiated and slow growing, you could live for a long time with it. Good luck to you.

Hello @sandy23,

As it has been a while since you lasted posted, I was wondering how your husband is doing. How is he feeling now? Any new treatments?

Hi Teresa,
Hubs is currently stable. His treatment is the Sandostatin/Octreotide. It appears that when his stress level is high the cancer likes to grow and spread. Since he has not been stressed out he has stabilized. A side note to anyone who has done the Lutethera treatment. During his treatment I noticed that his short term memory was not good. (I think I mentioned this in the post when he was having the treatment or shortly thereafter). Supposedly this is not a side affect of the Lutethera however, who's to say it's not? It's a fairly new treatment and maybe it's one to add to the list.
Anyway, he had been checked out by a neurologist and he said while that is not normal and he didn't remember some of the minor tests he gave him, the blood work and scan was normal. So the question is, is this a side affect of the Lutethera? Long term use of Sandostatin? Or something else? 🤔 I digress..
Apparently the protocol after Lutethera is CT and MRI scans alternating every 3 months with the Dotatate pet scan on a yearly basis. Which he has been having done for the past year. The surgical Oncologist stated there is still cancer in his liver and some lymph nodes and other places that he will watch for growth. Other than that he's doing well. He's actually talking to the orthopedic Dr about having both knees replaced. Go figure. Working on clearances from all of his doctors.
How are you doing? And thank you for asking.

It is so good to have your update, @sandy23. Being stable is a good thing. That is an interesting observation about the memory issue. How interesting that he is thinking about knee replacement. Has a date been set for that yet?

I am doing fine. No recurrence of the NETs, but I am dealing with other health issues right now. It seems it is always something.

I hope your husband continues to do well. Will you post when he decides to have the knee replacement?

Hello @hospicern

It has been a while since you last posted about your husband's health issues. At that time, the doctors were uncertain about Pheochromocytoma or a Paraganglioma. I hope that by now he has received a firm diagnosis and a treatment plan.

Will you post an update when it's convenient?