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 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 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
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 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
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’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
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
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.
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.
Thanks mam for your information about it 💐💕🙏🏼
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.
Thank you for your help
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 ?
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
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 🙏🕊️
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 wonder what the success rate is if caught in stage 1
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?
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
Rip Irrfan
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.
...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.
Super
This is it sloane