← Return to New Diagnosis: husband's labs are all indicating NET
DiscussionNew Diagnosis: husband's labs are all indicating NET
Neuroendocrine Tumors (NETs) | Last Active: 14 hours ago | Replies (36)Comment receiving replies
Replies to "Thank you so much for clarifying all that. I posted my journey on this thread as..."
Oops I forgot to repost my thread about my journey before sending the last message to you . Here it is 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. Since I have seen an oncologist and will be monitored with blood work and scans as well as urine test