1. < Neuroendocrine Tumors (NETs)
Profile picture for meleve

Neuroendocrine Tumor - no treatment plan method

Posted by meleve @meleve, Apr 30, 2025

Newly diagnosed with à neuroendocrine tumor Gr1 K167 under 1%. Was removed during a colonoscopy as it presented as a polyp, but the pathology report showed à Neuroendocrine tumour Gr1. It was small 4mm x 6mm and was into the mucosa/submucosal layer. The pathology report didn’t say benign however the Cancer team says they don’t consider this cancer, which conflicts everything I’ve read and researched. The oncologist also said they won’t be doing any further resection or follow up on the tumour even thought my chromogranin a levels are flagged as elevated and I’m still having symptoms. The CT scan didn’t show any evidence of anything else but the oncologist also won’t send for further testing despite having symptoms. Thoughts on no further testing or treatment plans? Or them saying it’s not a cancer?

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

Profile picture for siluka
siluka | @siluka | Feb 27 2:53pm
In reply to @michellehcapouch "I had two intestinal resections due to a bowl block. This is how my gpNET was..." + (show)
Profile picture for michellehcapouch @michellehcapouch

I had two intestinal resections due to a bowl block. This is how my gpNET was discovered. Then I had PET scan they found a meningioma brain tumor that was also in my right optic nerve. So thankful for pet scans finding other things wrong. Saved my eyesight. Finding things to me is a blessing because I can treat them, remove them. Ovarian NET found removed.. just so many examples I embrace bad news because it gives me control to address.

Jump to this post

@michellehcapouch i agree at least you and everyone else know they have nets or any other cancers and getting treatment others are walking around not knowing what is inside them.

REPLY
Profile picture for brewmano
brewmano | @brewmano | Mar 11 12:26am

Im sorry for your frustration. They removed what they assumed was a nodule was a neuroendocrine tumor. So much before this diagnosis. I'm having carcinoid syndrome and other symptoms as they claim they removed it all. Just know that symptoms are because there are neuroendocrine cells elsewhere. They have never put me on any medication. I am on my 3rd opinion and 2nd multidisciplinary oncology center. If you are having the facial flushing (carcinoid syndrome) it has metastasis to another organ. They don't know enough and are more concerned about missing a diagnosis or a misdiagnosed lawsuit. Stay strong..they are more worried about what they didn't do than what they could have tried. Im a female and one doctor prescribed me prostate medicine. Ask questions. Find the patient advocates within your area. 🙏

REPLY
Profile picture for panorman3
panorman3 | @panorman3 | Mar 21 9:50am
In reply to @lindabees "@panorman3 I'm sorry you had difficulty getting through to Mayo. Did you use the online appointment..." + (show)
Profile picture for lindabees @lindabees

@panorman3
I'm sorry you had difficulty getting through to Mayo.
Did you use the online appointment request? We found that to work extremely well in getting my husband his first appointment with a specialist at Mayo Phoenix.
We had first identified the specialist and asked for an appointment specifically with him. We got a call back within 24 hours and got the ball rolling.

Jump to this post

@lindabees said they would call back after i filled out a great deal, no call

REPLY
Profile picture for Mike
Mike | @dadcue | Mar 31 2:02pm
In reply to @hopeful33250 "@dadcue Hello Mike, My NETs were also found incidentally, as were many other members in this..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

@dadcue Hello Mike,

My NETs were also found incidentally, as were many other members in this group. After the incidental finding, however, treatments and follow-up were planned. I felt it was wise to follow up and also get a second opinion. While the idea of "no treatment" is more pleasant, when it comes to any type of cancer, it might not be the best route to take.

NETs are generally slow-growing, but they are also very small and might not be visible on a lot of scans. It is always best to seek the opinion of a NET specialist who can order the 68GA PET scan (https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/) and other blood work to determine if there is any metastasis. Here is a list of NET specialists from the Carcinoid Cancer Foundation, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

It is, of course, your decision to pursue this or not. However, like any cancer, the sooner a NET is dealt with, the better.

Jump to this post

@hopeful33250

Results from my Dotatate Scan are back. It doesn't seem so good but it probably could be worse.

1. Mid/distal ileal loop with focal high-grade DOTATATE uptake best seen axial fused image slice 232 (SUV 28) just right of midline very likely primary small bowel neuroendocrine tumor. Nearby nodal lesion with focal intense DOTATATE signal, 1.4 cm, adjacent to loop of nearby small bowel indicating metastatic mesenteric node best seen slice 236 axial fused images. RLQ mesenteric large 4.1 cm node which shows intense uptake (51.3 SUV). Findings indicate primary ileal neuroendocrine tumor with locoregional mesenteric metastasis.

There were some other things listed about my small intestine but otherwise there is normal physiologic uptake in the liver, spleen, pancreas, urinary structures and large intestine and everything above these organs.
-------------------------
I'm getting calls to make an appointment in Endocrinology and the GI clinic with more labs to be done prior to those appointments. There isn't any treatment plan yet so I'm hoping someone here could cut to the chase and tell me what should happen next. I doubt I will do any type of surgery so I'm more interested in my medical options.

REPLY
2 replies
Profile picture for Teresa, Volunteer Mentor
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 1 6:59am
In reply to @dadcue "@hopeful33250 Results from my Dotatate Scan are back. It doesn't seem so good but it probably..." + (show)
Profile picture for Mike @dadcue

@hopeful33250

Results from my Dotatate Scan are back. It doesn't seem so good but it probably could be worse.

1. Mid/distal ileal loop with focal high-grade DOTATATE uptake best seen axial fused image slice 232 (SUV 28) just right of midline very likely primary small bowel neuroendocrine tumor. Nearby nodal lesion with focal intense DOTATATE signal, 1.4 cm, adjacent to loop of nearby small bowel indicating metastatic mesenteric node best seen slice 236 axial fused images. RLQ mesenteric large 4.1 cm node which shows intense uptake (51.3 SUV). Findings indicate primary ileal neuroendocrine tumor with locoregional mesenteric metastasis.

There were some other things listed about my small intestine but otherwise there is normal physiologic uptake in the liver, spleen, pancreas, urinary structures and large intestine and everything above these organs.
-------------------------
I'm getting calls to make an appointment in Endocrinology and the GI clinic with more labs to be done prior to those appointments. There isn't any treatment plan yet so I'm hoping someone here could cut to the chase and tell me what should happen next. I doubt I will do any type of surgery so I'm more interested in my medical options.

Jump to this post

@dadcue
Hello Mike,

I appreciate your post with updates based on your Dotatate Scan. I'm sure you are relieved to have some answers. Most of us have found that a consultation with a NET specialist is the best move after your initial diagnosis. NETs are a rare form of cancer, and NET specialists have the experience and knowledge base that will be most helpful to you right now. Once you have an initial consultation, they may be able to work with your local oncologists to achieve the best results for you.

There are NET specialists at all three Mayo Clinic locations (appointment information is available at http://mayocl.in/1mtmR63). If it is not possible to be seen at a Mayo facility, here is a link from the Neuroendocrine Tumor Research Foundation with a listing of NET specialists: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/page/8/

It is also important to educate yourself about NETs. By learning as much as you can, you will be able to advocate for the best care. Here is some information from the Neuroendocrine Tumor Research Foundation website,
https://netrf.org/for-patients/
Here is more information from Mayo Clinic's website, https://www.mayoclinic.org/diseases-conditions/neuroendocrine-tumors/symptoms-causes/syc-20354132

I look forward to hearing from you again as you work through this process. Will you post any questions or concerns?

REPLY
Profile picture for eesnerd
eesnerd | @eesnerd | Apr 1 7:21am
In reply to @dadcue "@hopeful33250 Results from my Dotatate Scan are back. It doesn't seem so good but it probably..." + (show)
Profile picture for Mike @dadcue

@hopeful33250

Results from my Dotatate Scan are back. It doesn't seem so good but it probably could be worse.

1. Mid/distal ileal loop with focal high-grade DOTATATE uptake best seen axial fused image slice 232 (SUV 28) just right of midline very likely primary small bowel neuroendocrine tumor. Nearby nodal lesion with focal intense DOTATATE signal, 1.4 cm, adjacent to loop of nearby small bowel indicating metastatic mesenteric node best seen slice 236 axial fused images. RLQ mesenteric large 4.1 cm node which shows intense uptake (51.3 SUV). Findings indicate primary ileal neuroendocrine tumor with locoregional mesenteric metastasis.

There were some other things listed about my small intestine but otherwise there is normal physiologic uptake in the liver, spleen, pancreas, urinary structures and large intestine and everything above these organs.
-------------------------
I'm getting calls to make an appointment in Endocrinology and the GI clinic with more labs to be done prior to those appointments. There isn't any treatment plan yet so I'm hoping someone here could cut to the chase and tell me what should happen next. I doubt I will do any type of surgery so I'm more interested in my medical options.

Jump to this post

@dadcue
Hello Mike,
Your imaging sounds a lot like mine from several months ago. If you scan through this forum, you'll find that most of these cases are different, but it may sound a lot worse than it is. I have a couple of tumors in my abdomen with lesions on my pancreas and liver. I started monthly Octreotide injections last November, and my Serotonin and Chromogranin levels have gone from about eight times normal to near normal in that time. I've never had symptoms and still don't - my NET's were found accidentally in a cat scan looking for a hernia. Hopefully, you're in the same boat.

REPLY
2 replies
Profile picture for Teresa, Volunteer Mentor
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 1 9:35am
In reply to @eesnerd "@dadcue Hello Mike, Your imaging sounds a lot like mine from several months ago. If you..." + (show)
Profile picture for eesnerd @eesnerd

@dadcue
Hello Mike,
Your imaging sounds a lot like mine from several months ago. If you scan through this forum, you'll find that most of these cases are different, but it may sound a lot worse than it is. I have a couple of tumors in my abdomen with lesions on my pancreas and liver. I started monthly Octreotide injections last November, and my Serotonin and Chromogranin levels have gone from about eight times normal to near normal in that time. I've never had symptoms and still don't - my NET's were found accidentally in a cat scan looking for a hernia. Hopefully, you're in the same boat.

Jump to this post

@eesnerd
I appreciate your sharing your experience with @dadcue. I also never had any symptoms. You are right when you say that everyone's case is different. A biopsy will help determine the type and aggressiveness of a NET tumor/lesion.

Since you began your monthly injections, have any follow-up scans been done?

REPLY
1 reply
Profile picture for eesnerd
eesnerd | @eesnerd | Apr 1 4:26pm
In reply to @hopeful33250 "@eesnerd I appreciate your sharing your experience with @dadcue. I also never had any symptoms. You..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

@eesnerd
I appreciate your sharing your experience with @dadcue. I also never had any symptoms. You are right when you say that everyone's case is different. A biopsy will help determine the type and aggressiveness of a NET tumor/lesion.

Since you began your monthly injections, have any follow-up scans been done?

Jump to this post

@hopeful33250
I have my first follow-up PET scan scheduled in a couple of months. So far, the only real impact the NET's have had on my life is financial. My copay for the Octreotide is $1500 a month, but even that is mitigated by the fact that I hit my maximum out-of-pocket in January, so all my medications for the rest of the year are free, including the Octreotide and the high-priced Eloquis. We're making monthly payments to the hospital for all the imaging and the biopsy that took place last year. Later this year, we should be about square with them, and they've been great about it.

REPLY
View MoreView Less
Please sign in or register to post a reply.