Initial imaging and tests; what to expect after initial NETs diagnosis
Context:
I've known about my NETs diagnosis for less than 2 weeks. A very small NET was discovered during a routine colon cancer screening colonoscopy; my first colonoscopy ever! The doctor that performed the colonoscopy found two small polyps; one of which turned out to be a NET. He consulted with our local oncologist (who sees patients at our community medical center in rural Minnesota once per week). The oncologist said I could either wait 6 months and do another colonoscopy to get the remaining margins (and, I guess, see what growth there might be if any) OR I could have a procedure sooner to have the margins removed.
Rectal colon polyp, biopsy -
Well differentiated neuroendocrine tumor, WHO grade 1 (G1).
Greatest contiguous measurement at least 2 mm.
Margins involved.
Mitoses < 2 per 2 mm2 and Ki67 index < 3%.
Immunohistochemical staining (Synaptophysin, Chromogranin A, Ki-67) performed. Tumor is positive for synaptophysin. Chromogranin stains negatively. Occasional cells stain positive for Ki67.
I am planning to have a procedure to remove the margins next week, to meet with the oncologist the following week, and have an initial consultation at Mayo in MN in early September (unless an earlier appointment becomes available).
I had been having a variety of vague symptoms that I was guessing were perimenopause (I'm 47) or stress (frequent loose stool). I would occasionally have blood in my stool, but I thought maybe just hemorrhoids or something. My menstrual cycle is a little off, but not too bad -- some other changes I noticed that I thought were perimenopause (occasional hot flashes). My vision has been worse, and I've had more headaches and a couple of aural migraines (new to me). I also had a cold or some other virus last summer that I just couldn't shake (was pretty severe and lasted about a month, I still feel like I get winded more easily than I used to). I masked all year at work because I seemed to get COVID once a semester when I didn't, and that cold/virus from the summer really wiped me out. I'm now wondering if some of my symptoms could be NETs. The tumor was so small, I don't know if it would be likely to cause symptoms in its presence or relieve symptoms with its absence in any meaningful or noticeable way.
My initial appointment includes some bloodwork and CT Chest/Abdomen/Pelvis Multi Exam. I feel concerned/scared that there may be more NETs elsewhere, and I'm curious if it's normal to not include a PET scan. I don't know if my other symptoms would indicate call for a PET scan, or what other things might suggest that a PET scan would be useful or not useful. I wonder if I didn't say enough about those other symptoms in the lead up to the appointment. I feel like I'm being a little bit of a hypochondriac or attributing *any* symptoms to NETs that *might possibly* be from NETs (but might certainly just be normal for getting a bit older, gaining a little weight, being under stress, etc.)
In addition, I was off my thyroid medicine for 3 weeks to check if my body still needed it... and turns out it definitely does. I've been on that medication for hypothyroidism for 20 years, but a few years ago it was suggested that maybe my body has started doing some thyroid stuff on its own again... it was never a convenient time to try going off meds until this summer when I just happened to have a gap between most recent refill and time for annual physical (well, slightly delayed... hence the gap in refill).
That is a long message.
Question/request:
I'm wondering if people would be willing to share what kinds of things happened at their first appointments after diagnosis for anyone whose NETs journey started with the incidental finding of a tumor in some kind of routine screening such as a colonoscopy. My tumor was just so small... but I'm still feeling very afraid that it might be a metastasis *from* somewhere else even if this tumor itself was not looking particularly aggressive. I don't want to miss anything in this initial set of scans/tests. It seems like this could be the best case scenario of a tiny NET that can be removed and then we just monitor. Have others had that experience? Or, have others thought they *might* have that experience based on initial findings, but then some particular test caught some sneaky NETs elsewhere? Basically, if they are there, I just want to know. Did anyone *not* initially have a PET scan, but then bloodwork or CT scans led to a later PET scan?
I feel a lot better knowing the appointment is on the horizon with whatever tests the Mayo team thought made sense. I don't want to miss something because I didn't share enough about my many little seemingly disparate symptoms.
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Connect

Mine was a malignant net.
@ln100 I am so sorry to hear of your hardships. My husband is facing the possibility of the Whipple.
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1 Reaction@jagzandsherz everybody reacts differently to the whipple surgery. Many people don’t have difficulties and go back to “normal” within months. It’s a difficult surgery for both surgeon and patient but I’ve read about so many people that did great. I just happen to have had complications during surgery, in the hospital and I’m 1 year out. Read other people’s comments. You’ll see. Everyone is different. If your husband needs it make sure you go to a very experienced surgeon and they have good follow up care. I don’t feel mine did and I went to a renowned hospital and surgeon. I’m bitter right now because I really just want to go out to lunch with my husband and I can’t right now. But don’t go by me. It’s life saving for so many and if you read more you’ll see that so many are so grateful they had it. Your husband is going to do great and wonder what the ???? Was that lady talking about. @ln
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1 Reaction@ln100 hello. I also had a neuroendicrine tumor on the head of my pancreas which was found by accident. I went to the ER because I ate some food that triggered a reaction from some medication I was taking. While I was there, they did a scan of my chest, abdomen and pelvis. They saw something on my pancreas. I had no symptoms. I felt fine. I had an MRI and it showed. they told me it was so small that I could just watch it. I had a biopsy through an endoscopy and they couldn’t get anything because it was so small. I went to a renowned hospital and spoke with the surgeon there and he wanted me to get a biopsy there so I did and they were able to get tissue and it turned out to be malignant. I was recently told by an oncologist that I had the best kind of ““ pancreatic cancer that you can have because it’s not your typical pancreatic cancer when when doctors think of it. it’s more a neuroendocrine tumor on my pancreas. Very confusing well the surgeon set up surgery for me right away for a pylorus preserving Whipple surgery. That’s the first surgery I have ever had. I am now 69 years old. This was a year ago and unfortunately, I had a lot of complications and I was in the hospital for five weeks and I’m still having many many G.I. problems. I had CAT scans but I never had a PET scan. I never needed chemotherapy or radiation and I had blood tests every week for months ( a nurse came to me) one cat scan, a colonoscopy and an endoscopy. The oncologist said I don’t need scans just blood work every 9 months or so. Tell your doctor everything just in case.
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1 ReactionI commented to you but because I am totally lost on this site it didn’t go to you. I hope you see it. About neuroendocrine tumors.