Diagnosed with NET si-NET Stage 1 Grade 1
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.
Well, officially not yet. That's just what the ct report says. That or a GIST. But I've been symptomatic for years.
I do have a question. The report says, it's a neuroendocrine or a GIST in my small intestine. Its only 8mm. Is it too small to remove? Also, a camara capsule was a further option, but that seems redundant. I'll know more on the 30th. Its been going on for so long, I just want it out.
What has been going on so long?
Sorry..my symptoms have been horrible and going on for years. Always thought it was menopause. Flushing, high HR, BP...test after test..ect.
Hello @carver1164 and welcome to Connect. As you have been diagnosed with a GIST or neuroendocrine tumor in the small intestine, here is a link to posts from other members of Connect who have discussed having a GIST: https://connect.mayoclinic.org/search/?search=GIST.
I would encourage you to read the posts and then ask questions or make comments below the posts that interest you.
How are you feeling now? Has any treatment plan been suggested by your medical team?