Neuroendocrine Tumor - no treatment plan method

@ceefer Who told you that you had a NET? Do you know what kind of contrast was used? There are different contrasts. I understand why you are scared. I am concerned for you. I know those symptoms quite well. I went down a very similar path.

@ceefer

Hi, how are you? I'm sorry to hear what you're going through. It might be helpful to identify what type of neuroendocrine tumor (NET) it is. Some tumors, especially pancreatic ones, can cause diabetes. Perhaps if it can be removed, those issues would be resolved. My wife had a pancreatic NET that caused diabetes mellitus. After the removal, everything went back to normal. I recommend that you ask a lot of questions and also read up on things to learn and protect yourself, not to scare yourself. I wish you the best of luck.

@tomrennie I do not know the type of contrast used. I tried looking it up in my patient portal but it didn’t say what type was used.

@gustavo1975 thank you.

@tomrennie how are you now?

@ceefer I am doing great thanks. But, it was a struggle to get here. I experienced vomiting, diarrhea, stomach pain, gas, bloating, fatigue, and just plain feeling like crap for a long time. I first started feeling like this during covid. Going through the diagnosis process takes time. My body, since I was getting sicker, didn't always cooperate. Combined with covid, the process was delayed. When I was finally diagnosed in 8/22, I lost over 100 pounds. My 8cm pancreatic net in the body and tail was blocking some important plumbing. The cancer spread to my liver which had innumerable lesions with a few over 8cm. My pancreas and liver weren't functioning properly. My body was wasting away, cachexia. I looked like I was pregnant from the accumulation of fluid in my stomach, ascites. The cancer also spread to my bones. I started chemo on 9/1/22. I now live on chemo with a 4cm tumor on my pancreas, liver lesions with the biggest also around 4cm, and lesions on my bones. I am fortunate to be alive. Please seek the advice of a NET specialist sooner rather than later. The expertise of my specialist saved my life. I have listened to other patients with NETs on here being treated by non NET specialists. Some have gone through extensive surgeries, or endured chemo regimens that historically don't work on NETs, only to end up on the same chemo as me with a lot less body parts. The chemo that I am currently on, capecitabine, doesn't work for everyone. Each person's body is different. How we all manage our NETs, the doctors and treatments we choose, is our decision. It is our body. I just want to share my experience with you, so you can hopefully avoid my journey. Do you have any other questions?

@hopeful33250

Should I start to worry???

Other labs are pending. The capsule endoscopy is being scheduled sometime before my GI appointment on May 26th.
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CHROMOGRANIN A, SERUM*IC
Result 410 ng/mL (High)
Reference range
< 93 ng/mL
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There is a disclaimer attached that says:

"Test results cannot be interpreted as absolute evidence for the presence or absence of malignant disease."

Dr Google says this result may indicate a neuroendocrine tumor (NET).

I have also read that "other conditions" can cause a falsely elevated CgA result.

@dadcue Reads as yours is caught early. 🙂 May want to ask for a PET Dota Tate scan which will specifically search for NET tumors throughout your body. Your CGA is a bit high. My last CGA was 7,195

@tjstaufr

Thank-you! ... your CgA result helps me put mine into perspective. I don't really want to do anything that looks for another medical problem. I have plenty of medical problems already.

I'm not even sure that I want to do a capsule endoscopy that is going to be scheduled. Just because something "looks suspicious" on an abdominal CT scan ... maybe it is better to back off and leave it alone.

@dadcue
CGA can be unreliable as a net marker as it is easily and frequently impacted by other things, usually ppi's. Had you taken any ppi's such as pepcid prior to the labs?