Information and introduction

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Information and introduction

by Mmketch on Tue Jun 05, 2018 10:42 PM

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Hi guys! Glad I stumbled across these message boards! We recently have had quite the shock here... My 15 yo daughter in February had what they thought was acute appendicitis and was transferred to a children’s hospital for an appendectomy. Fast forward to almost 3 months later- she is recovered fine, but now seeing an orthopedic surgeon for a Syndesmotic sprain, that was fairly severe. We were awaiting results to see if this would need surgery when the surgeon called me back. From here, it gets a little lost... I think it was just so unexpected. The surgeon apologized that it had taken him so long to call me, however, he wanted to consult with colleagues about how to proceed- I’m confused as I believe it was only the day before I had talked with him. We finally get ourselves straightened around and he explains that he is the surgeon that preformed my daughters appendectomy. I didn’t start taking notes until late in the conversation as I was just blown away. And when I came home and told my daughter and husband I was so disappointed that I felt so uneducated and unsure of what the surgeon had actually said. He told me that they had found a carcinoid tumor during biopsy. A centimetre by a centimetre. He told me worst case- that there’s more and they go in to take out more bowel. That’s really all I remember. I think he said he thought it was benign, but also that there were abonormal cells? My notes don’t even make sense. I called my family physician the next day and he told me the report that he had stated it was a stage 1 neuroendocrin tumor. He couldn’t provide me with any more education or information. He said they are fairly rare and he didn’t feel comfortable speaking to it. We have taken in a 24 hour urine- 5HIAA? And done blood work with chromogranin-a. CBC has come back fine, but haven’t heard about the others. She also has a CT scan booked for June 29, and we sit down to “make a plan” July 9. The surgeon and doctor have assured me not to worry... but I don’t know what any of this means. I’m getting really great info online, but some of it can be conflicting. What am I missing? Is a Pediatric surgeon good for nowto consult? Should I be requesting someone or something different? Do I need to assist my other two kids in following up? How can I silupport my 15 yo? What questions should I be asking? Any information or guidance would be so helpful. Big hugs to all those out there going through difficult times. ??
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