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

@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)

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!

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.

Interesting. I thought that the Mayo folks would probably order whatever scans they thought would be most appropriate for NETS. I'll have to be sure that I've shared enough information with those NETS specialists so that they can tell me what scans or tests would be most appropriate. I would not want the doctors to go against what they think is the right set of tests, but I would like to know more about why they don't think a PET scan is something that should be part of the plan.

I would imagine that Mayo Clinic in Rochester, MN would have PET scans available (I think there was an earlier post telling about this, in fact). Perhaps I just need to ask more questions. There is more than a month before my scheduled appointment there, so I think I have time to find out more. How often do you have CT or PET scans after initially finding out you have NETs? Is there a typical regimen or spacing of those tests?

Can you say which part of my results show/suggest that the tumor is "Samatostatin Receptive"? Is it this part: "Tumor is positive for synaptophysin."

Maybe I just need to be sure they noticed that in the information they can access in MyChart. If I just need to point that out for them to think that a PET scan is warranted, I could definitely do that. I'm not sure how different doctors feel about patients prodding the suggested tests and asking for certain ones. Any experience with that?

I have a PET scan every six months. I have a Lanreotide injection once a month.

My “guess” on why the PET scan wasn’t ordered is due to it being stage 1/small size & your age. Plus, insurance companies will deny any procedure they can so it’s cheaper for them. The Dr also needs to submit thorough documentation. My insurance company denied my first PET scan & Drs appeal was also denied. When they finally approved it, it had metastasized to liver, appendix, peritoneal lining, diaphragm & upper/lower colon, stage 2-3. I ended up having a 2nd huge, painful, cytoreductive/debulking surgery. Once I retired & Medicare was primary, I’ve had no issues getting PET scans approved. That is why I preach to be your own best advocate & push for the tests you want/need.

@prariezebra & fraaseo: Your diagnosis points to the cells being Samatostatin Receptive. Fraaseo points you in the right direction - be a strong patient advocate for your healthcare. It looks Iike you need a Gallium 68 PET scan ordered by a NET Specialist Oncologist documenting urgency to rule out NET Metastases. You have been given several peer experiences and helpful recommendations - you decide how you want to proceed.
Best health for you..

Hi, I'm new here. I found out I had NETs incidentally as well. During a CT for kidney stones (in February this year), a neoplasm was found on the right middle lung lobe. I was sent for a regular PET scan which showed one on the left upper lobe, a possible lymph node nodule and a thyroid nodule. They biopsied all (4 separate procedures). The 2 lung tumors are NETs. The lymph node and thyroid are benign. Once I got the positive NETs results I was sent for a Dotatate PET. A month later, I was sent back for a CT. For me, the CT showed a much clearer picture (plus 3 more previously unseen) no false light ups than the PET scans did. I was told they will do all follow-ups with CT, fine by me.

I am set to have a right middle lobectomy the 31st. The left upper lobe will get radiation. Both of those tumors are just over 1 cm. The other 3 are 5 mm and less so will just be watched. I don't have any of the symptoms of NETs. Unless fatigue counts.

Every time I go in, they reassure me that this is a very non-aggressive, slow growing, rarely metastasizes cancer. So I haven't been too worried. Hopefully they'll give you some info that helps you relax.