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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
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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Interesting that through all that you have not had a PET scan? Does your situation seem favorable as the doctors state? ABSOLUTELY! 🙂
Good luck to you.
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2 ReactionsThank you for your words ! I can’t seem to knock this depression and I’m scared so hearing you agree that things sound favorable helps . I have a Pet scan coming up in a few months thru my oncologist treatment monitoring plan.
Hello how are you? I'm sorry you had to go through this. I tell you, my wife went through something very similar, only the tumor was in the pancreas. They performed the surgical resection, with negative edges, today, March marks one year since that. He has check-ups every 3 months, blood tests and CT scans.
Having said all the above, fear and worry are always there, but you have to be positive, not worry but get busy. Your NET was small, low grade, you have very good prospects for the future, you have not had lymph node infiltration or metastasis so that is very good. Stay calm, everything will be fine. Live and enjoy life, one day at a time.
I send you a hug
Sorry for my English. I am from Argentina. Greetings
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A year ago I had a similar event except my 6.9cm tumor was in my left lung and atypical. I had my upper lung removed and the tumor had not spread so I understood it at the time that this was the cure. However 6 months later after my first CT scan which was clear, my cardiothoracic surgeon mentioned that the cancer could come back since it was atypical. Ever since then I have been depressed and just “waiting to die”. No one explained neuroendocrine tumor to me and I’ve done a lot of research since then. I have an appt with an oncologist later this month to try to learn more and if I should go to a bigger city to see a specialist. I will be watching your feed for comments.
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1 ReactionI understand how you feel ! I’ve done a lot of research , well mostly google and I’ve gotten a lot of answers but google isn’t case specific and doesn’t take into account your personal NET . I am being monitored now as I stated by an oncologist. With the monitoring I feel good that if there is a reoccurrence it will be caught early and surgically removed again. Mine was a small intestine Carcinoid of the ileum. It was very small.5mm and it was “Typical” carcinoid or NET , not “Atypical. My ki-67 was < 1% so everything about it was good except for the obvious fact that it was a tumor . Reoccurance is low but can happen. I felt better after all this but as I still learn more it just brings up more questions and since I still don’t know all the answers it brings up the fear and depression . I have OCD and anxiety so in my mind I must have all the answers. Plus It’s my health ! Can I ask your age ? I’m 54.
Wow thank you so very much for replying I truly appreciate your positive words . I’m so happy to hear your wife is doing well ! I hope to keep in touch from time to Time if that’s ok ? Argentina ? Wow that’s awesome
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1 ReactionI cannot give medical advice, but of course, we will be in touch. I read the forum every day. If there is something that we need, it is support, to share experiences and learn in this new life. Hugs.
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1 ReactionThank you
Your English is great and your story was easy to follow. Definitely do all the monitoring and feel confidant you still have many many years to enjoy life. I have lung NETs (typical)/DIPNECH with Ki -67 2%. 2% made me think of low-fat milk so I think of my NETs as low-fat cancer. 😊 My 50+ lung nodules were discovered in 2008 but based on respiratory symptoms they’ve likely been there at least 35 years. I had the largest 2.6 cm tumor destroyed with microwave ablation but we can’t remove them all ( all around 1 cm) since they are scattered across both lungs. Very slow growing. Bottom line is after decades I’m still stage 1 as the NETs is contained in my lungs. Things are looking good for you. Keep enjoying your life as I do mine. I just consider all my medical stuff part of the new normal — just part of my task list. Blessings to you.
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1 ReactionI’m 68 yr old woman. I had a lot of tests done before surgery and they all turned out good. Biopsies, blood work, echocardiogram, endoscopy, pulmonary tests, CT scans, brain MRI and PET SCANS. There was only the one tumor in my lung and it hadn’t spread anywhere else. I was originally scheduled to have my entire lung removed but the surgeon was able to get the whole tumor with just my upper left lobe removed. I read my charts online and there is no mention of what stage or grade it was, or any other numbers, just that it was atypical. I went to see an oncologist after surgery and he said there is no chemo that works on this cancer and he felt I didn’t need any other meds.