NET symptoms despite follow-up lab work ok

May I know your age?

a very young looking 72 - still work full time from home - have been having issues for many years and it was diagnosed as bad IBS - see oncologist @ Dana Farber every 6 months - lab work done in August - "Fine" just had endoscopy beginning Sept -waiting to hear, pathologist report posted 2 wks ago - looks like issues with stomach, "not cancer" still waiting for response from doctor to explain it all.
Good luck with everything you are dealing with. I just remain pro active and try to be as calm as I can be. So many other people are being told the same thing about their labs being fine but they still feel so poorly. This cancer is like a Ninja hiding in the reeds, just biding its time.

God bless.

Thank you for responding.
Best wishes😊

41 when first diagnosed with NETs (then referred to as carcinoid) ... 60 now.

I'm going through the same with the symptoms and no answers. All the test fine except for my Gastrin level was high. I'm 74 and every day is the same waking up sweating, nausea, forceful bowel movements, vomiting and eventually fainting! Only my Cardiologist (went because they thought it was my heart) thought it was Neuroendocrine- r/o GIST. My Endocrinologist was wonderful. She did every test possible to r/o hormonal. She encourages me to keep going. GI doctor was useless. My other doctors look at me like I have 3 heads! So I made an appointment in California for the Prenuvo Scan which picks up everything. Hopefully I will get some answers. Believe me I know how you feel and how discouraging it is with the doctors. If they had the symptoms they would understand better. I feel your anguish and I pray you get some answers and relief. Just don't give up! Keep going, no matter how many doctors you have to see and how many test need to be performed. You need to be your own advocate. I will post my results from my scan which is being done October 14th. Hang in there and do the best you can. My prayers and thoughts are with you and with everyone dealing with this.

Those are the EXACT symptoms I am having. My heart goes out to everyone going thru this. I tell each of my MDs that the smartest thing I ever did was to join this Mayo Clinic support group because I see that I am not alone in dealing with this rare cancer, and it is the best website for information and referrals to additional websites for neuroendocrine cancer. It really is a lonely struggle, so we do need to be proactive in our care. Thank you and God bless.

I just want to give an update since I had Prenuvo Scan October 14. That scan found an brain aneurysm, a nodule on my left lung and 2 nodules on the head of my pancreas. These did not show up on any of my scans done this year. So I'm so thankful I went to LA to do this scan. All my doctors are NOW concerned that these nodules can be neuroendocrine since I've been suffering with all the symptoms for the past few years. I am seeing a Pulmonologist today and in January will be having an Endoscopic Ultrasound with possible biopsy of the pancreas. If I did not pursue this on my own, I don't know what would have happened in the future. Again, listen to your body and don't stop. If you don't get answers from one doctor continue to the next. None of my doctors were in favor for this Prenuvo scan, but now they are speechless! Wish me luck and will keep the updates.

I’m glad you’re starting to get to the bottom of the cause of your symptoms. There is also a net specific scan,
Ga-68 Dotatate scan, that scans the entire body, picking up any somatostatin positive lesions that are often missed by mri. These are widely available now and are part of standard testing for nets.

Excellent information. I briefly tell my Dana Farber oncologist about situations with people here who are told everything is within acceptable range, yet they continue to have the symptoms. We do have to be proactive in our health, we know we are sick but I feel that unless there is a lab report that verifies something is "off" , there is no "next step". It is better to have second and third opinions until we find a definitive answer. My oncologist appreciates the time I spend investigating neuroendocrine cancer and the resource sites I use i.e Mayo Clinic, NIH, National Cancer sites. I know at some point my "Ninja in the Reeds" cancer will manifest itself, & I want to be well prepared to discuss tests/procedures to be performed. I pray for all of you.

Lab tests frequently tell you nothing with this disease. If you looked at my husbands labs at any point since he was diagnosed 15 years ago you could say is was in perfect health. Obviously, he’s not. As patients and caregivers we need to ensure that we are getting the best possible care. And get that care or at least periodic consults from a net specialist. A general onc typically does not have the proper knowledge to investigate and treat this disease.