Understanding Neuroendocrine Tumor in the Colon
Hello, I'm a 41-year-old woman dealing with asthma, hypothyroidism, SVT tachycardia, and POTS. I stand at 5'2" and weigh 124 lbs. Recently, I underwent both an upper endoscopy and a colonoscopy. The results revealed a pre-cancerous polyp in addition to a neuroendocrine tumor. Today, my gastroenterologist performed another procedure to place a tattoo marker at the tumor site and has recommended an endoscopic ultrasound (EUS) to confirm that the tumor has not invaded deeper tissues. According to my physician, the tumor is benign and does not appear to be cancerous, and she reassured me that there is little risk of it returning. I must admit that I didn’t fully grasp the situation and the implications of what I’m facing. While I understand that neuroendocrine tumors are not the most common condition, they aren't exceptionally rare either. I'm reaching out for advice on proactive measures or additional tests that I should consider for my health. Interestingly, I received some contradictory information from MD Anderson regarding my tumor's growth rate; even though my doctor mentioned it was slow-growing, I've heard that these tumors can sometimes display aggressive behavior and metastasize. I'm uncertain whether I should pursue a PET scan, as my doctor indicated genetic testing isn't necessary. My goal is to take every proactive step possible, and I would appreciate any suggestions regarding specialists or specific procedures I should consider. For instance, during the upcoming EUS of my colon, should the medical team also assess my pancreas? Historically, I've dealt with GERD and H. pylori infections, and I frequently had strep throat during childhood. Additionally, I have breast implants but have generally enjoyed good health. I sought medical attention prompted by an instinctual concern, especially after losing an uncle to stomach and pancreatic cancer just two years ago. Thank you in advance for any insights you can share regarding my situation.
Answers (1)
3/20/2025, 12:30:49 AM
OpenHealth AI
Thank you for sharing your situation, and it's completely understandable to feel overwhelmed given your recent diagnosis and the complexity of your health background. Here’s a clear breakdown of what you’ve shared and some actionable steps to consider.
Key Points
- Neuroendocrine Tumor (NET): Your gastroenterologist has indicated that your tumor is benign and slow-growing, but it’s essential to monitor it.
- Endoscopic Ultrasound (EUS): This upcoming procedure will help assess the tumor more thoroughly.
- Concerns About Aggressiveness: While NETs can be diverse in behavior, it’s good that you’re seeking to understand its characteristics and potential implications.
Explanation
Neuroendocrine tumors (NETs) originate from neuroendocrine cells and can vary significantly in terms of behavior; some are benign while others can be aggressive. Slow-growing NETs are often managed more conservatively, especially when deemed benign.
The upcoming EUS will provide important imaging that can clarify whether the tumor has invaded surrounding tissues and will help understand any risk of progression. It’s worth discussing with your medical team about evaluating not just the colon but also the pancreas during the EUS, as some NETs can arise here.
Actionable Steps
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EUS Preparation:
- Confirm with your medical team if the EUS can also evaluate your pancreas for any abnormalities.
- Discuss whether any additional imaging, like a PET scan, is warranted based on the EUS findings, especially given family history.
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Monitor Symptoms:
- Keep a symptom diary of any gastrointestinal changes, new symptoms, or concerns, particularly related to your GERD or previous H. pylori infection. This information can be valuable for your healthcare team.
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Stay Informed:
- Ask your doctor for clear explanations regarding the characteristics of your NET, including growth rates and the rationale behind the recommendation for or against genetic testing. Understanding these aspects can help you feel more in control.
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Consider Nutritional Support:
- Given your history with GERD and digestive issues, working with a registered dietitian familiar with NETs could help optimize your diet and manage symptoms.
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Emotional & Psychological Health:
- Dealing with health uncertainties can be challenging. It might be useful to connect with a counselor or support group, particularly for those navigating similar cancer-related concerns.
Remember, it’s essential to advocate for your health by asking questions and voicing any concerns you may have during your appointments. You are taking proactive steps, and that’s a strong approach to managing your health. Let me know if there are any other specific questions or concerns you'd like to discuss!
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