Initial imaging and tests; what to expect after initial NETs diagnosis

Posted by prairiezebra @prairiezebra, 1 day ago

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.

@prariezebra:
I’ve been in a similar situation and know your apprehension & fear well. 4 yrs ago my NET was discovered by a gastroenterologist’s curiosity. He went back for another look, found suspicious lesion, took a biopsy that led to my NET primary diagnosis.
If you can, have a PET scan done prior to your oncology appt. with a NET Specialist. Ask for a Gallium PET scan since you already have proof your tumor is Samatostatin Receptive (this scan will reveal exact location & size of NET tumors). Be sure to take all scan reports and discs with you to appt., as well as notes on ALL of your body’s responses for the last year or two - night sweats, diarrhea regularity, nausea, vomiting, weight loss/gain, everything that has happened with DETAILS (it all adds up to help doc for best treatment choices). Also, You can always get a referral for 2nd opinion on your diagnosis and treatment plan!
NET specialists know what is best for you (unlike regular Oncologists or surgeons who don’t know the quirks of NET tumors) and how to recommend treatment options.
My first appt included my first 28 day injection of Lanreotide, which reduces many symptoms like diarrhea, etc. and can control progression of tumors. It is just a shot in the butt - given to many NET patients that regulates hormones that can spread the disease.
Thank goodness most NET cancer is very slow growing and some patients remain stable for a long time.
There are many effective treatments as well as Surgical options that deserve your research to help you feel more confident in how to deal with this unwanted situation. Online you will find several Neuroendocrine Tumor Cancer Support groups that offer peer support, u-tube or zoom presentations by nationally respected Specialists and recommendations - like Mayo Connect that is a treasure chest of info. It is so helpful to have a “safe” place where we can get our questions answered.
I hope this lowers your anxiety level tonight. It helped me to learn as much as I could about this new world of NET cancer, become familiar with the medical terminology and where I could get the best treatment/scans/tests.
You are not alone. This is a rare cancer, but many of us are here to help you through the tough times.
I’m offering a hug and much hope that you are going to deal with this!
I am here as well as many who will reach out to you from this group… we have had experiences like this.
Bette (@dbamos1945)

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The first thing I would do is demand a gal68 dotatate PET scan. Depending on the results, I’d postpone any surgery until I was able to see the NETS Specialist/Surgeon (that’s just from my 3 year experience/history with GI NETS Mets). They are specialists & the best chance of getting/keeping your NETS controlled. Your symptoms also mimic classic NETS, diarrhea & flushing. Keep in touch, this group is very helpful!

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You do seem to be a prime candidate for a PET scan at this point. Both Copper and Gallium isotopes are typically used in this situation. Which one is based on your health care facilities convenience to a Cyclotron. I've had both several times. Having NETs can be scary and challenging, but your initial findings do look promising for a long high quality life. Best wishes to you.

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