New Diagnosis

Finding out you may have a net is a hard thing to deal with! Stay positive there are a lot of treatments and tools in the toolbox as my Net specialist told me. I hope you have a multidisciplinary team. If not get one! You didn’t elaborate about symptoms or how this presented you stated high chromagranin A . Does he have symptoms? If the suspected tumor or tumors don't have not have receptors the won’t light up on the PET scan I think 90% have them. It sounds like you have a lot of unknowns at this stage. I am one that studied my disease so I know what may happen down the road. I know everyone is different so always do what’s best for you. I was diagnosed in May 2021 have been through a lot but the team has me stable at this time I am 68 I have Primary Pancreatic Net with inoperable functioning metatastic liver tumors I go to the University Of Michigan Medical Center

I'm sorry you're going through this
When you refer to pet scan was this a gallium or copper scan? Those are specific for nets. Has he had a MRI of the abdomen?
Also chromogranin a is highly affected by outside influences such as the use of PPI's like pepcid if prilosac.

The PET was Gallum. His symptoms are worsening. The Tumor Board feels he either has a Pheochromocytoma or a Paraganglioma.

Thank you! His symptoms started like he was having panic attacks, high BP, headaches, left flank pain. He has lost 110 pounds. MRI and CT showed tumors on both adrenal glands. Our hospital system is partnered with Mayo Clinic.

Best to you and your husband! Sound like you have a good team!

I am on large amounts of PPIs more than double the normal because of my functioning gastrinomas and the chromagranin A is still a marker for tumor growth when Gastrin is high so is the chromagranin

I will pray for you both, it’s not easy I know. Stay strong.

Just some info that might help you: Until you have NETs under a microscope, you're insurance may not consider it cancer. That was my case and I even had a hot PET scan to prove it. Only after I had a positive biopsy, did they seem to consider my condition cancer. With a cancer diagnosis your insurance may provide more comprehensive coverage. I have Nets of the Mesentery.

Don't put too much faith in Chromogranin results. I think your symptoms tell more of the story. Best of luck to you. You are your own best advocate.

Hi,
This is my first post on this site. Just discovered it a few days ago. I was diagnosed with a NET on/in my liver this past November. What a rollercoaster ride. It's actually a metastasis from a NET I had removed in 2008. Thought I was out of the woods back then. Since it's spread it's considered Stage 4. Who is on a multidisciplinary team? Right now I have an oncologist at University of Wisconsin. And I would appreciate some guidance for finding the treatments and tools in the toolbox. Right now my toolbox seems pretty empty. Thank you?

Can he come off the PPI's for a week and recheck gastric levels and repeat scans?
PPI's are known to cover net's diagnosis.