Diagnosed with NET si-NET Stage 1 Grade 1

Posted by rogers5870 @rogers5870, 6 days ago

I went on 1/3 for my first preventative colonoscopy. I was scared to death as I am a worry wort lol. Colonoscopy went fine only one polyp then as he went down a bit more in my terminal ileum near the small intestine he found a “nodule about 10mm he thought “. He said it looked like a carcinoid tumor. He tried to biopsy it during colonoscopy but couldn’t quite get to it so he took tissue around it to biopsy. Well you can imagine I was beside myself . I mean a total wreck waiting for these biopsy results . Finally came back “no pathological abnormality “ so all seemed fine. He then said he wanted to do an abdominal/pelvic CT Scan W/Contrast. Oh great I thought now what are they going to find ??? They will be looking at so many organs …. Again pure fear came over me . A week later I had the CT Scan and fortunately the results were back about 20 mins after leaving hospital. No other tumors found only 2 little cyst on kidneys which they said was nothing to worry about and common for my age. So now we know the one tumor in small intestine in terminal ileum hasn’t spread GREAT NEWS!! So he set me up for surgery to remove the tumor . Surgery was a laparoscopic robotic right colectomy. I had it on 1/20. Stayed in hospital 3 days. He removed the tumor, terminal ileum, ileceol valve, part of my ascending colon, my appendix and 10 lymph nodes. I think he was just being cautious lol. After pathology came back it said I had Grade 1 Neuroendocrine tumor that had not spread , has excellent margins etc. my results were all very favorable and should provide cure since I had surgery. A lot of people who have Neuroendocrine tumors are found after they have already spread and metastasized to other organs like liver etc and at that point there is no cure only treatment so you basically live with cancer . I have a follow up Friday for post op then he will place me with an oncologist where I’m assuming I will have to have scans and blood work every 3 to 6 months to check for reoccurrence. It can come back but with surgical removal and my tumor being so small (ended up being .5mm) and the fact all other pathology looked good my chances are low it will come back .

Update:
went to post op appt Friday and doctor said all my incisions looked great and released me to drive and eat whatever I want 😋. He had the receptionist set me up with oncology doctor so I should hear from him this week and get in with him I guess to set up im assuming some sort of plan to monitor me going forward with periodic CT scans and bloodwork just to check for reoccurrence. The post op visit made me feel much better. I asked the doctor in the post op appt if this would kill me and he said I had a better chance of dying from a good ole fashion heart attack lol. It’s strange but I know I had this Neuroendocrine tumor that they removed in surgery so it’s gone now so it’s hard for me still as I have depression about well “do I still have cancer if it’s gone”? “What if it comes back?” ….. it’s really had me very depressed and questing mortality . I am sure this is all normal with such a health scare but I just want to shake this depression and I don’t know how. My husband is my rock and such a huge help to me so I’m so grateful . I think going forward and working with an oncologist and knowing I’m being monitored will help me mentally going forward. It’s definitely been life changing

UPDATE: Hsve since been seen by oncologist and I had blood work done and all looks good and I’ll be turning in a 24 hr Urine Sample Monday as well. Follow up scans later in a few months. My question is does my situation seem very favorable as the doctors state? What are my chances for reoccurrence since the tumor was small and very favorable ? My Ki-67 was less than 1% also and no cancer in respected lymph nodes from surgery so no spread

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

@rogers5870

Thanks for letting me know all that . I was actually asking though how long ago your surgery was.

Yes I understand the “Whirlwind” of activity. It’s like so much happened in such a short period of time . It all comes out of no where . I was shocked I had a NET. Now like you I still have so many questions but mostly fear even though they got it all out . I guess fear of the I know and what ifs but I know it’s not healthy to live like that so I’m trying with the help of my husband to get better mentally as well

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I had a breast MRI last year Jan 31, 2024 and the dreaded phone call came the next morning Feb 1st saying a “lesion” was found in my left lung. Surgery was April 2nd.

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@jocat74

I had a breast MRI last year Jan 31, 2024 and the dreaded phone call came the next morning Feb 1st saying a “lesion” was found in my left lung. Surgery was April 2nd.

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So you just had the one NET and seems like they got it all and since you have had no reoccurrences . Thus is great news !

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@rogers5870

So you just had the one NET and seems like they got it all and since you have had no reoccurrences . Thus is great news !

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Yes great news. I wish I knew what caused it and how to take some preventative measures. The surgeon looked back at previous MRI’s and the tumor was there but the radiologist missed it. I’m so lucky that although the tumor was quite large, it never spread.

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@jocat74

Yes great news. I wish I knew what caused it and how to take some preventative measures. The surgeon looked back at previous MRI’s and the tumor was there but the radiologist missed it. I’m so lucky that although the tumor was quite large, it never spread.

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Yes I understand wanting to know or wanting to find out what caused it and how to prevent more. Mine as I stated was very favorable as well and only the one and it was grade 1 stage 1 and I had it removed . I feel so blessed it was found early but I am so depressed and extremely worried about another reoccurring that it consumes me and is really affecting my daily life . All this stuff with finding out I had a NET to begin with all just started 6 weeks ago and since then I’ve had all these blood test, a scan, surgery and now an oncologist so it’s all still very VERY fresh so I hope in time my depression and worry will subside

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@rogers5870

Yes I understand wanting to know or wanting to find out what caused it and how to prevent more. Mine as I stated was very favorable as well and only the one and it was grade 1 stage 1 and I had it removed . I feel so blessed it was found early but I am so depressed and extremely worried about another reoccurring that it consumes me and is really affecting my daily life . All this stuff with finding out I had a NET to begin with all just started 6 weeks ago and since then I’ve had all these blood test, a scan, surgery and now an oncologist so it’s all still very VERY fresh so I hope in time my depression and worry will subside

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I think the best thing we can do is to educate ourselves about NET and keep up on the latest treatments even though we are considered cured. I am doing lots of research and am considering seeing a specialist in Milwaukee but first I am going back to my oncologist to hopefully get more information now that the shock has worn off. Let’s keep in touch!
Julie O’Connell

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@jocat74

I think the best thing we can do is to educate ourselves about NET and keep up on the latest treatments even though we are considered cured. I am doing lots of research and am considering seeing a specialist in Milwaukee but first I am going back to my oncologist to hopefully get more information now that the shock has worn off. Let’s keep in touch!
Julie O’Connell

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Yes you are so right I try to learn as much as I can . Google can sometimes be depressing as it goes by if I on NETs as a whole and not my individual case. I’d absolutely love to keep in touch . I’d love to send my info to you but not on here . Do you have a FB? And I’m in Texas

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@rogers5870

Yes you are so right I try to learn as much as I can . Google can sometimes be depressing as it goes by if I on NETs as a whole and not my individual case. I’d absolutely love to keep in touch . I’d love to send my info to you but not on here . Do you have a FB? And I’m in Texas

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Yes I am on FB in Green Bay, WI.

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