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Small Bowel Cancer Diagnosis
I have had 4 CT Scans and a PET Scan. 2 of the Scans came back with an impression of malignant carcinomatosis and 2 came back with no cancer impressions but possible chrohns or some other issue. The PET scan came back with no high activity for cancer anywhere in my body. I went to my General Surgeon and he told me he is almost 100% sure it is some form of Small Bowel Cancer. My current symptons are abdomen pain in right lower quadrant and horrible spasms with gurgling. I have had blood work done and everything came back perfect. I also have not lost weight, have an appetite, no vomitting..etc. I have, however, had long term diarhea and lower right pain that i atributed to a hip problem. I have done extensive research and it sounds like if i do have cancer it would be aNeuroendocrine tumor. Has anyone had this type of situation? I have only had the spasms for a month. My assumption is that if it was advance active cancer i would have horrible blood work and be exibiting all of the normal symptons. Thanks in advance.
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Did the Dr run 5-HIAA urine test or Chromogranin A (CgA) blood test? These tests are tumor markers that look for serotonin producing neuroendocrine tumors (NETs), especially small bowel (ileal) NETs. Scans may not pick up small tumors if they are very small.
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4 ReactionsDo you still have your gallbladder? Pet scans involve isotopes. There are many different isotopes used in PET scans investigating many types of cancer. The two common isotopes for NETs are Gallium and Copper. I wonder what isotope was used for your PET scan?
Getting a Neuroendocrine cancer diagnosis can be tough. Its often an illusive cancer that is not detected until symptoms force a search for answers which can take a while. I had intermittent small bowel problems for years before correct diagnosis.
Ask your general surgeon for biopsy results. Your insurance company will want NETs under a microscope before they are 100% sure, you can bet on that! 🙂 My first surgeon said "My first, second, and third guess is Non-Hodgkins Lymphoma". He was wrong.
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4 Reactions@fraaseo I did not have those tests run. My biopsy is this Thursday.
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2 Reactions@jlsgt I still have my gallbladder. My PET scan came back clean. My biopsy is Thursday
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1 ReactionI am only speculating based on my symptoms, history and scans that this is neuroendocrine. It just all fits.. That is if it truly is cancer, which I'm assuming it is. I'm just hoping Its not other more aggressive ones. Based on everything it does not seem to be though.
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1 Reaction@klewis10367 Hi and welcome to Mayo Connect. You already have had some great input from others. Like @jlsgt suggested, the isotope/contrast used in your scans makes a difference in identifying neuroendocrine cancer. Do you know what contrast was used? What is being biopsied this Thursday? Thanks.
@tomrennie This was the contrast on my CT Scan: IOHEXOL 350 MG IODINE/ML INTRAVENOUS SOLUTION: 80mL The biopsy is for small bowel cancer.
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1 Reaction@tomrennie This was my F-18 FDG PET Scan findings:
Mediastinal blood pool SUVmax 1.7
Background liver SUVmax using BMI 3.1
There is normal physiologic uptake involving the heart, liver, spleen, kidneys and collecting system. Uptake is seen in the bowel likely related to physiologic excretion. Mental thickening is identified particularly in the right lower quadrant with some activity within it this is 2.9 SUV which is less than background liver uptake.
IMPRESSION: Omental thickening particularly in the right lower quadrant
demonstrates low-grade activity. No pathologically increased uptake is seen.
@klewis10367 Copper-64 dotatate and Gallium-68 dotatate are both radioactive PET scan contrasts used to find neuroendocrine tumors by attaching to somatostatin receptors. I actually get the Gallium-68 dotatate scans to monitor my NETs. Hopefully, the biopsy on Thursday will give you more definitive results.
This was my doctor's summary after biopsy. Result not back yet. omental caking present
adherent to sigmoid and lower anterior wall, these points were mobilized
omentum primarily attached to ascending colon suggesting appendiceal source
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