In English (kinda!):
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• Stage 4 Neuroendocrine Cancer — (Incidental finding during a CT scan at the emergency room for severe back pain.)​
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• Incurable at this time, unless new treatments/research arise.
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• Primary (original) 2.5 x 2.0 cm malignant tumor located in the terminal ileum (small intestine).
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• Metastasis (spread) of 25+ tumors spanning both lobes of the liver, the largest being 4.5 x 3.6 cm, invading the hepatic artery.
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• Necrotic (dead) lymph nodes, largest measuring 2.7 x 1.8 cm.
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• Tumors also found in the peritoneum and mesentery (the membrane surrounding organs in gastro area).
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• Very likely many more smaller tumors undetected by scan, per oncologist.
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Update: The primary intestinal tumor, 50+ lymph nodes and 3 feet of bowel were surgically removed on March 7th, 2024. Will be receiving liver embolization procedures in July/August 2025. (See post bochnerblog.com/post/tumors-misbehaving-a-bit ) for more info on the procedure.
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What is neuroendocrine tumor (NET)?
Neuroendocrine tumor grows from neuroendocrine cells. Neuroendocrine cells receive and send messages through hormones to help the body function. These cells are found in organs throughout the body. (Neuroendocrine tumor is the updated term for the obsolete "carcinoid" tumor.)
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Neuroendocrine tumors often grow very slowly. When caught early, they can be incredibly treatable. However, in many cases, such as mine, they have been brewing and spreading for many, many years. In children and young adults, neuroendocrine tumors are most often found in the appendix, called appendiceal neuroendocrine tumors, or in the lungs, called bronchial tumors. In adults, neuroendocrine tumors are most often found in the digestive tract, called GI NET. This tumor may spread to other parts of the body but does so more often in adults than children.
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How common is NET?
Neuroendocrine tumor is rare in children and more common in adults. Experts think that carcinoid tumor affects 4 in 100,000 adults. Neuroendocrine tumor in children and young adults is so rare that there is little data on how many young people have it.
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My Results
Dotate PET/CT 12/1/23
HEPATOBILIARY: Few bilobar discrete lesions compatible with oligometastatic disease with the following representative max SUV and image number:
15.6 segment 2 misregistered to the lower mediastinum image 145.
14.0 segment 7 image 151.
20.1 caudal aspect of the right lobe border of segments 5 and 6 image 188. The lesion adjacent to the falciform ligament is probably extrahepatic peritoneal.
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PLEURA/PERICARDIUM:
Nonavid right middle lobe pleural scarring along the mediastinal plane.
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MESENTERY:
Avid lesion intimately associated with the terminal ileum max SUV 19.8 consistent with primary lesion; no bowel obstruction.
Avid upper abdominal peritoneal deposit max SUV 22.6. Line back level uptake (less than liver mean) at the Park calcified right lower quadrant nodule image 219 which measured 1.8 2.6 x 1.8 cm on November 4, 2023 diagnostic CT. No ascites.
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IMPRESSION:
1. Avid distal ilial lesion.
2. Few avid peritoneal lesions including dominant upper abdomen nodule adjacent to the liver.
3. Few hepatic metastases without evidence for extra-abdominal metastatic lesions.
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BOWEL (primary fucker): Endoluminal polypoid filling defect in the terminal ileum measuring 2 cm on series 9, image 253 with surrounding retraction of the adjacent small bowel wall/desmoplasia/fibrosis, typical in appearance for a carcinoid. No invasion of surrounding structures. In addition, there is a frank malignant/metastatic necrotic ileocolic lymph node measuring 1.9 x 2.8 cm on series 9, image 206 with chunky internal calcification. Few other tiny but abnormal and indeterminate ileocolic nodes seen adjacent to it
BIOPSY: The majority of the submitted specimen consists of a low-grade neuroendocrine tumor with a primarily cribriform architecture. No significant nuclear atypia is seen. A rare mitotic figure is identified. Immunohistochemical stains for synaptophysin, chromogranin and CDX2 are strongly positive. A stain for Ki-67 is positive in approximately 3% of cells.
MESENTERY/BOWEL: Rounded enhancing soft tissue mass in the terminal ileum is 2.5 x 2.0 cm, corresponding to the known primary neoplasm.
HEPATOBILIARY: Bilobar hepatic low attenuation lesions, consistent with metastases. A representative right hepatic metastasis is 4.5 x 3.6 cm. No biliary ductal dilatation. Multiple subtle hepatic hypodensities are seen
fun fact.... appears i was misdiagnosed 2.5 years ago with liver hemangiomas.... waiting for conifirmation
ABDOMINOPELVIC NODES: Right lower mesenteric lymphadenopathy is 2.7 x 1.8 cm.