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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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Thanks for your reply. I’m so glad they got yours out as well and I hope your are doing well now with no recurrence. How long ago was your surgery?
Surgery was about 4 hours. I was in ICU for 3 days and then a regular room for 2 more days. Everything went perfectly and better than expected. From start to finish was only 2 months but what a whirlwind of activity! I had a wonderful cardiothoracis surgeon and hospital stay was great. But now I’m being haunted with all these questions trying to understand how this happened and what exactly is this cancer. I never realized it was a rare cancer but I guess I never took the time during this process to ask questions. I did a lot of praying!!!!!
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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1 ReactionI am a grade 1, stage 4 and know exactly how you both feel. It’s the hardest thing not having answers. I will be having tests in April to see if the prrt treatments have helped. Until then there is a lot of anxiety about the answers. I chose to find activity that gives me creative ways to improve myself and that has helped me with any depression. When I have a bad day I take time alone to give myself space and rest. I live moment by moment trying to be grateful for all I have in my life. It helps me stay rooted and positive.
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1 ReactionThank you for replying . What type of NET do you have and is it stage 4 because it had already spread when it was found? Sorry I’m just trying to understand all this. You seem like you have the right attitude and positive approach. I hope to get to be as strong mentally soon as you are
Here’s a brief summary prior to starting treatment with Dr Wolin.
59 year old male presents with PMH of gastrointestinal issues. 12/2020 abdominal US - hepatitic steatosis, 2 right lobe hepatic 0.9cm cysts. 1/2021 colonoscopy and endoscopy performed- diagnosed with gastritis and mild diriticulitis. Prescribed Omeprazole with limited relief noted.
Flushing reported to PCP- no concern noted.
10/2023- notified PCP about continuing gastrointestinal issues: feeling bloated, abdominal pain/cramping, periodic diarrhea. Sent for colonoscopy, endoscopy and abdominal US. Abdominal US revealed multiple (15-18) hepatic lesions. Sent for CT-scan and MRI- mass found in mesentery. Liver Biopsy performed- diagnosed with Grade 1, well differentiated neuroendocrine tumor. 11/15/23 Seen by medical oncologist at Lehigh Valley Hospital Hazleton- sent for Dotate PET scan and Chroamagran A blood test.
12/12/23 Surgical Oncologist at Lehigh Valley Allentown- resected 60 cm small intestines including 2 primary GI tumors. Mesentery mass not resected secondary to close proximity to mesentery artery and vein.
Current plan of treatment- monthly Octreotide injections ( began 1/23/23) Discussed possible Nuclear medicine therapy- PRRT.
CT scan , echocardiogram, 5-HIAA , and bloodwork scheduled for 2/8/24.
K167< 1%
Had a consult with a NET Dr at Dana Farber- Recommendation- monthly Landreotide Injections.
Consulted with Dr Wolin 4/24. Concerned with mesentery tumor pressing on mesentery vein and artery. Recommended PRRT.
4 PRRT completed at Mt Sinai in NYC. Last treatment 1/3/25.
Follow up in April. Dotate PETSCaN with copper isotope (more definitive than Luthera. ) ,
CT scan and Plasma test. Appointment with Dr Wolin 4/28/25.
To answer your question, yes if it spreads (metastasized) I have it in my liver, mesentery, sub-clavicular lymph node and acetabulum ….
Thank you so much
So it seems like you had NETS probably back in 2020 when you went to your PCP but maybe they were missed? Because it wasn’t till 2023 when the liver tumors and mesentery mass were found and then they diagnosed you with NET. Thats a short time grabe fir all that to form and spread so it seems you had a NET perhaps in 2020 that went undetected? I hope I’m reading into this correctly .
Yes, that’s correct. It was missed. I had been complaining to my primary doctor about flushing for a few years prior. Then had some terrible issues with my stomach from 2020 to the diagnosis. My dr thinks I may have had it over ten years.