NET symptoms despite follow-up lab work ok

My husband has been having the same difficulty. We can’t get any physician to help us. We go for a Provo scan in January 2024. I’m hoping this will give us some more answers and try to get a doctor to support us. Did you show your scan to Your current doctors or are you going to a new one?

^ Prenuvo

@lindabees How did you finally get help?

We actually never had trouble getting help. His pnet was found incidentally and we’ve only seen NET specialists since that diagnosis. All have provided him with excellent care. A NET specialist is crucial to treating this disease. And even then we sometimes had to be persistent. For example, following his first surgery he frequently digestive and bowel issues (pain and diarrhea) Creon did not work but the specialist we saw for many years didn’t seem to have a solution. When we moved out of state and saw a new specialist, we talked about it and he suggested a bile test. Bingo! His system wasn’t getting rid of bile properly. He prescribed a med for it and that issue is now much better. Bottom line - if at all possible get your care from a net specialist. And if the one you see doesn’t help, seek a second opinion. Some even do video consults for 2nd opinions.

My doctors would not listen to me at all! Just kept saying they don't know why I get sweating, nausea, vomiting, diarrhea and finally I faint! Now wouldn't you think they would check further???? No, just do nothing. So doing this Prenuvo scan showed the nodules on the lung and pancreas. All my CT and PET scans showed nothing. So they were shocked. And NO, not one of them would look at my disc. They were afraid of a virus. But, not one of them told me I could go to Southwest Medical Radiology(I live in Las Vegas) and ask them to upload the disc to my records. And do you know who told me this, it was the PA that I saw Monday for the nodule on my lung. She was shocked that not one doctor told me this. She said many people come in with disc from other states and the doctors tell them to have them uploaded. I think they did not want to tell me because they are being sarcastic about the Prenuvo Scan being the scan to the Hollywood Stars! The Prenuvo is not only in LA it is in other states. I am so upset with the medical care out in Las Vegas. They have no interest unless they order the test. I also have CLL and again it was a PA that diagnosed that after a couple of years complaining of the the symptoms. All the doctors I saw told me I had a urinary tract infection! OMG, just listen to your body and change doctors when you do not get answers. If you have trouble doing that, call your insurance company and ask them to help you. The PA for the lung feels most of my symptoms are coming from the pancreas. I have an endoscopic ultrasound in January with a new GI doctor! Most doctors, especially out in Las Vegas, never dealt with a patient with Neuroendocrine symptoms. I spoke to one surgeon who said in all the years he was in practice he only had one patient. So that's why when you tell them your symptoms, they can't think outside the box. They would tell me it's your CLL, which I did not have when my symptoms started or it's hormonal, had all that checked out perfect. I'm not diabetic, no high blood pressure, actually nothing but the CLL and I do have a rare neurological disease which would not cause the symptoms I am getting.
So I suggest once you get the scan request the disc, they will mail you a complete report and disc. Then ask your primary doctor where you can get the disc uploaded to your records. I'm sure every state has the same regulations for out of state disc. If you don't get answers call your insurance company and ask them how to get the disc uploaded to your medical records.
I want to wish you the best of luck. I know what you are going through. I'm a persistent person and I never take no for an answer when I know there is something wrong. My best to you and please keep us updated on your scan. You will be very impressed with the Prenuvo team. They are so kind and compassionate.
I see the PA for the lung in 2 weeks and she said probably will order a biopsy.

I'm on the path to getting the help. Lung biopsy and pancreatic biopsy. Will have more answers in January. I truly watch what I eat and when the symptoms start, I lay down and put a wet washcloth on my head to cool down, hoping I won't vomit. If I stay like that, if I'm home, the episode will pass. Honestly, I don't have answers to how to stop these episodes, but I think once I have answers there will be something that will help. Fingers crossed.

We went to a PNET specialist at Mayo in Rochester, MN and he completely ignored our concerns he said it wasn’t coming from the tumor.. I was completely applaud by his behavior as a physician there he had no compassion. We were so excited to go to Mayo hoping we would have a plan when we left there and when we left we we’re more confused then ever.. we were completely disappointed because we thought Mayo’s reputation was they would find a solution as they advertised. Nope we were sent on a plane to go home! Completely discouraged!! I personally think we just saw the wrong doctor there!

I am so glad you found some answers l! Personally for us I think we just need to find the right doctor who wants to help instead of making my husband think he is completely crazy and making this stuff all up! Not sure how you can make this up when daily your lying on the floor every night thriving in pain in his stomach area!

I totally know how he and you feel. At least you are there to confirm it. My symptoms have been happening sin 2011! I live alone and that's why the doctor's don't believe me because no one has witnessed it happening to me. We are not crazy! Just that they are not knowledgable about neuroendocrine tumors. Just keep going until you find the right doctor that will listen and help. Very frustrating, but eventually there will be one smart doctor that will give you the answers and help. Try your best to find a Neuroendocrine doctor where you live. Unfortunately, there aren't any in Las Vegas! If all else fails, when he is in horrific pain, go to the ER. Then they will take it seriously and do bloodwork and scans right away. Maybe you will get some answeres. My best to you both and trust me I know how he feels. Please keep us informed. Happy Holidays and may the new year bring you peace especially with your health.

Thorvardur Halfdanarson is at Mayo Rochester and is one of the top specialists in the country.