My mom was first diagnosed with multiple myeloma but later also diagnosed with neuroendocrine tumors in the brain and passed away in 2020 just over a month after been diagnosed with neuroendocrine
I had NET diagnosed 4.5 years ago. I have started a couple months pursuing a diet assisted plan. I have seen many videos her on youtube with cancer docs promoting no sugar no carb solutions
I had one removed from my lower colon during my first colonscopy. I wasn't diagnosed "with cancer," and never got "the talk," just diagnosed with a NET. Not even sure of stage. So I assumed I didn't "have cancer," but I am not sure. They checked 6 months later and it hadn't come back. Doesn't mean it won't.
@@frsmith5069 I got diagnosed with a low grade well diff Neuro tumeor grade 1 ki 67 less than 1. Pos for synaptophysin neg for chromogranin. My gastro snared the polyp .3 x .1x .1 . Rec me to go to colorectal surgeon just to make sure it's all out. Anything else I shod do?
No, no MRI. I'm supposed to go back for another colonoscopy later this year though. It's a bit unnerving not knowing if there's another one forming somewhere else.
Well she wasn't able to get it all out. She just took a biopsy and that is what it turned out to be. I went to a colon surgeon, he said this grows in the middle layer and recommend a full piece of the tumor removed and then for it to be sewed back. Can I get your email and we can talk thanks
I have one ( that we found by surprise ) it's between my stomach and liver. I have to go to a cancer treatment center. No one can or will tell me if the tumor is cancer or not. Grade 2.
I had a rectal net grade 1 but i have other polyps that are pre cancerous so every year i need to get a colonoscopy but they wanted to say if the net was cancer they just said you have a mass we didn't get it all out we need to go back in and remove the rest
Dear Doctor, My mum’s also same tumor grad 1 and it was on small intestine , recently did surgery removed 90% , now doctor said no need for any treatment only do the follow up every 3 months it’s not a problematic tumor grad 1 What you suggest
How did your symptoms start? I have painful lumps all over my abdomen and some of my lymph nodes hurt and I have a partial bowel obstruction ): my GP is so slow to get back to me.
@@GayMarcoting sorry took so long to get back to you but I had pains in my stomach and it got worse to the point where I was just trying to sleep all day I was close to dieing when the finally found it the doctor would tell me I had bacterial infection or ulcers at one point I was told I had Corona virus they took the tumor out and half of my large intestine
I had a couple scans where they said it did shrink it a bit. Thou it could have been different radiologists looking at the scans. They say 10 to 15% can get shrinkage. Not removal, and NOT continued shrinkage necessarily. But it can
I’m on the octreotide every 3 weeks shrunk my tumor the Everolimus please have your kidney function test as often as possible it damaged my kidneys it’s functioning at 75% now I was down to 15% on that awful drug
Just lost my dad to NETS yesterday. Wish there was a way to cure all cancer indefinitely
I'm so sorry for your loss
Io lo ho allo stomaco e al fegato non posso curarmi come vorrei rischio un rene trapiantato
I’m sorry for your loss Gloria
@@marinacorsiglia9742 I’m so sorry Marina, have you got some good doctors ?
I'm so sorry. So sad
Wow! She explains it with so much empathy. Thank you
Thank you for speaking in a way for me to understand
Please let us know if we can answer any questions or help you find any other information.
Thanks mam for your information about it 💐💕🙏🏼
My mom was first diagnosed with multiple myeloma but later also diagnosed with neuroendocrine tumors in the brain and passed away in 2020 just over a month after been diagnosed with neuroendocrine
My mom alsow passed in 2020 from net. 2 years this month, it just sucks.
Thank you for your help
I had NET diagnosed 4.5 years ago. I have started a couple months pursuing a diet assisted plan. I have seen many videos her on youtube with cancer docs promoting no sugar no carb solutions
I had one removed from my lower colon during my first colonscopy. I wasn't diagnosed "with cancer," and never got "the talk," just diagnosed with a NET. Not even sure of stage. So I assumed I didn't "have cancer," but I am not sure. They checked 6 months later and it hadn't come back. Doesn't mean it won't.
Did they do an MRI?
@@frsmith5069 I got diagnosed with a low grade well diff Neuro tumeor grade 1 ki 67 less than 1. Pos for synaptophysin neg for chromogranin. My gastro snared the polyp .3 x .1x .1 . Rec me to go to colorectal surgeon just to make sure it's all out. Anything else I shod do?
No, no MRI. I'm supposed to go back for another colonoscopy later this year though. It's a bit unnerving not knowing if there's another one forming somewhere else.
Well she wasn't able to get it all out. She just took a biopsy and that is what it turned out to be. I went to a colon surgeon, he said this grows in the middle layer and recommend a full piece of the tumor removed and then for it to be sewed back. Can I get your email and we can talk thanks
@@Nixlplix how are you going now Nixlplix ?
Im 35 with a 3 year old baby and I was diagnosed a couple of months ago. I have surgery in September to take a chunk of my lungs out on my left side.
I have one ( that we found by surprise ) it's between my stomach and liver. I have to go to a cancer treatment center. No one can or will tell me if the tumor is cancer or not. Grade 2.
I'll be praying for you 🙏🕊️
Super
I had a rectal net grade 1 but i have other polyps that are pre cancerous so every year i need to get a colonoscopy but they wanted to say if the net was cancer they just said you have a mass we didn't get it all out we need to go back in and remove the rest
Dear Doctor, My mum’s also same tumor grad 1 and it was on small intestine , recently did surgery removed 90% , now doctor said no need for any treatment only do the follow up every 3 months it’s not a problematic tumor grad 1
What you suggest
Ñ MMB þtu0i8i76 terr g þþ
I have this sucks just found it had blockage in my small intestine 3 weeks ago
How did your symptoms start? I have painful lumps all over my abdomen and some of my lymph nodes hurt and I have a partial bowel obstruction ): my GP is so slow to get back to me.
@@GayMarcoting sorry took so long to get back to you but I had pains in my stomach and it got worse to the point where I was just trying to sleep all day I was close to dieing when the finally found it the doctor would tell me I had bacterial infection or ulcers at one point I was told I had Corona virus they took the tumor out and half of my large intestine
@@GalvezGameingTv Hey dont want to be rude but how are you doing now?
@@GalvezGameingTv how are you doing?
@@malena7362 I am good now thankfully how about your self?
I wonder what the success rate is if caught in stage 1
Rip Irrfan
What if now u have just the cells plus a auto immune
i have friend get this
neuroendocrine tumors of the thymus
contact me please
...and it does not generally shrink the tumor. I think she should say...BUT it does not shrink the tumor.
I had a couple scans where they said it did shrink it a bit. Thou it could have been different radiologists looking at the scans. They say 10 to 15% can get shrinkage. Not removal, and NOT continued shrinkage necessarily. But it can
3% response rate on Octreotide, 22% on prrt. There are always outliers.
I’m on the octreotide every 3 weeks shrunk my tumor the Everolimus please have your kidney function test as often as possible it damaged my kidneys it’s functioning at 75% now I was down to 15% on that awful drug
How's your health. How you diagnosed
Every 3 weeks? Insurance companies have "issues" if you can't make it 4 weeks.
This is it sloane