New Diagnosis

Hi and thank you for sharing your story . I was wondering about the size, grade and stage of the NET in small intestine that was found in your husband in 2019. Also your post helped ease my mind, thank you for that

When he started out it was a T4N1 stage. I don't know exactly when they gave it that "label". Not sure if it was before or after he had his PET scan. Btw, a Dotatate PET scan is recommended for NETS. They pick up the NETS better than a regular PET and smaller ones as well. So when he was initially diagnosed it was under emergency circumstances with having a blocked intestine. The surgeon found the tumors outside the intestine and in a few of the lymph nodes and then 2 months later they did a PET scan. That's when they found it had metastastisized to his liver and several
more lymph nodes. I'm not sure how big the tumors were but I can tell you they were big enough to where they grew and spread enough for him to have surgery on his liver. They "debulk" the liver which means they removed as many tumors as they can with the knowledge that this probably won't be the last "debulking". In my hubs case instead of removing the right lobe like the surgeon suggested he also gave the option of being more conservative and making wedges and taking out the tumors with the least amount of liver possible. However, personally I'm not sure that was the best route bc the pathology report came back with 9 of the 11 specimens still being positive for disease instead of having clear margins. They also had to take the gall bladder and also removed
tumors from the other lobe as well. He also had to go through IV radiation for 6 months after that which was not without some side effects and inconveniences. He is at 14 months out of the IV radiation now and 2024 to present his Dr has been having him do MRI and CT's alternating every 3 months. With October still being his PET scan month. This Thurs he goes back for a follow up with his surgeon. I get the feeling they are watching something closely. I do read the scans and can see growth. But to what degree from their perspective? Not sure. They see this daily while us worry warts sit back wondering when the other shoe will drop. Not sure this helps. I can look at his scans and get more of a definitive size if you'd like. From my side. ...I have to support his decisions even when I'm not sure that's the route to go. We talk about it and he makes the final call. That and pray... that's my job.

May I ask how big your tumor or tumors are and what the Dr wants to do??

Thank you so much for clarifying all that. I posted my journey on this thread as to the size etc of my tumor but I’ll reshare it here. I feel like mine was caught very early and has a low risk of reoccurrence but I’m still very worried and depressed as this is all new to me . Is your husband able to be positive? I wish I could find away to get thru the worry/depression. Many blessings to your husband and that he kicks the NETS ass 😡

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