My younger brother was diagnosed 5 months ago and sadly passed away from an aggressive form of this disease at 32 yo. Make the most of your life and every opportunity that it gives you!
After I got diagnosed with Net, an year and more I went for Endoscopy but found no change in its size. And it is in Duodunam. Now no loose motion and reduced much. I don't know the prognosis. I think it happened to me when I was working in Kuwait as Project Supervision Engineer and I was under stress and high Tension.
We had no clue about my wife’s NET until two years after this talk. She lived less than 8 months after being diagnose. She was grade 3. This stupid disease took my wife of 40 years from me.
Amen! Think about ALL the possibilities before they disregard any symptoms because someone is too young to have a severe diagnosis! Demand PET scan. At every regular yearly check up. The insurances shouldn't fight paying for them ,either! Our daughter in law died after 6 months diagnosed. No treatment was available that worked, Dr's gave her no options, hope or answers. She's left 2 beautiful boys and our son to grieve her death forever.
How can I get back to the present, 2022? I accidentally deleted when I got new phone. Really enjoyed that page. Even made friends, as well as learned alot from other people's conditions. Mine was in cecum with surgery. Had already metatasised to right eye. Been 9 1/2 years. Am blind in that eye.
Thanks,Im dealing with something like this or this,my liver segment 5 has a suspicious area,said a cyst,or necrotic neoplasm plus I have a bunch of hemangiomas.Last CAT scan said this,had another and a hypodense area segment 5 and says nothing about hemangiomas,Radiologist said MRI recommendation.This time I am going to get the Mri w tumor enhancing contrast.But I wonder why. they do not just go to the PET scan.
I hope you are still doing well. I got a CT scan and a PNET was found. After an ERCP, the biopsy results stated that my PNET was 9mm and was well differentiated with a ki-67 index of less than 2%. So I went for scans every 6 months. My initial scan showed 7mm, the biopsy showed 9mm, then six months later 1.2 cm, and three months later 1.3. Frankly, I'm lost. I asked my surgeon to restage them because of the four different sizes. It was found to be 1.3 and I also have a BD IPMN of 3mm. My doctor said I needed to have a distal pancreatectomy. I was pretty much unconcerned until this. I now have an oncologist. I saw a PNET specialist and he said to watch it. I opted to have it removed because I don't want it to metastasize. Tumor board, my surgeon, and my oncologist said removal. I'm tired all the time. More exhausted than tired. I had shortness of breath and stomach pain. I feel like no one is taking my pain into consideration. So I hope that it will be ok. I hope you are ok too.
My sister was diagnosed in February 2020 with NET (neuroendocrine tumor), on March 16, 2020, a PET-CT was done. There she was informed that she has endocrine metastases not only in the liver but also multiple metastases in the abdominal wall (peritoneal carcinomatous). She started SSA Octreo-Ratiopharm 20 mg therapy (monthly injection). However, liver metastases have increased compared to February 2020 and to May 4. MY QUESTION; a BIOPSY was never made and will be made in mid-June 2020. is it correct that from February to June she never had a biopsy?
I’ve been diagnosed this type of tumor on anterior mediastinum from biopsy. Doctor still couldn’t determined size of tumor and stage from CT and petscan.(not 68a -dotatae). They just know it’s localized. They would like to go ahead to have open chest surgery. Should I go ahead with surgery?
I was diagnosed when going in for what we thought was a kidney stone and ct was done .. I have stage 4 its in my lungs, my liver , my peritonal and small intestine and my lymphnodes....Im 63 and lanreotide shots are the treatment. My oncologist say that my tumors are inoperable...
No. Neuroendocrine tumor is its own cancer type, based not on where it occurs in terms of organs, but in terms of cells. It starts in the body's neuroendocrine cells, which are located throughout the body. netrf.org/2018/11/07/pancreatic-neuroendocrine-cancer-vs-pancreatic-cancer/
My younger brother was diagnosed 5 months ago and sadly passed away from an aggressive form of this disease at 32 yo. Make the most of your life and every opportunity that it gives you!
He is a good speaker and explains things well. Fatigue is my biggest problem.
Doing great 2 years after my diagnosis .My Pnet is under control and my oncologist is confident I will outlive him.Please don't give up!
Hi Phil my husband just got diagnosed grade 1 ?
@@malena7362 bhi na
After I got diagnosed with Net, an year and more I went for Endoscopy but found no change in its size.
And it is in Duodunam.
Now no loose motion and reduced much.
I don't know the prognosis.
I think it happened to me when I was working in Kuwait as Project Supervision Engineer and I was under stress and high Tension.
Hey @@babupukkunnen6549 how are now ?
What a helpful and well-presented lecture.
Fantastic!!
Thanks , excellent presentation.
We had no clue about my wife’s NET until two years after this talk. She lived less than 8 months after being diagnose. She was grade 3. This stupid disease took my wife of 40 years from me.
So sorry for your loss. My God comfort you... ❤
Amen! Think about ALL the possibilities before they disregard any symptoms because someone is too young to have a severe diagnosis! Demand PET scan. At every regular yearly check up. The insurances shouldn't fight paying for them ,either! Our daughter in law died after 6 months diagnosed. No treatment was available that worked, Dr's gave her no options, hope or answers. She's left 2 beautiful boys and our son to grieve her death forever.
I'm so very sorry for your loss 😔 Praying for all cancer patients
Shame
How can I get back to the present, 2022? I accidentally deleted when I got new phone. Really enjoyed that page. Even made friends, as well as learned alot from other people's conditions. Mine was in cecum with surgery. Had already metatasised to right eye. Been 9 1/2 years. Am blind in that eye.
Wish there was a bit more information regarding high grade, I feel they are like a separate entity... 😞
Im also a high grade. I definitely know where you're coming from
Thanks,Im dealing with something like this or this,my liver segment 5 has a suspicious area,said a cyst,or necrotic neoplasm plus I have a bunch of hemangiomas.Last CAT scan said this,had another and a hypodense area segment 5 and says nothing about hemangiomas,Radiologist said MRI recommendation.This time I am going to get the Mri w tumor enhancing contrast.But I wonder why. they do not just go to the PET scan.
I hope you are still doing well. I got a CT scan and a PNET was found. After an ERCP, the biopsy results stated that my PNET was 9mm and was well differentiated with a ki-67 index of less than 2%. So I went for scans every 6 months. My initial scan showed 7mm, the biopsy showed 9mm, then six months later 1.2 cm, and three months later 1.3. Frankly, I'm lost. I asked my surgeon to restage them because of the four different sizes. It was found to be 1.3 and I also have a BD IPMN of 3mm. My doctor said I needed to have a distal pancreatectomy. I was pretty much unconcerned until this. I now have an oncologist. I saw a PNET specialist and he said to watch it. I opted to have it removed because I don't want it to metastasize. Tumor board, my surgeon, and my oncologist said removal. I'm tired all the time. More exhausted than tired. I had shortness of breath and stomach pain. I feel like no one is taking my pain into consideration. So I hope that it will be ok. I hope you are ok too.
@@lunargoddess2002praying for you 🙏🏿❤
My sister was diagnosed in February 2020 with NET (neuroendocrine tumor), on March 16, 2020, a PET-CT was done. There she was informed that she has endocrine metastases not only in the liver but also multiple metastases in the abdominal wall (peritoneal carcinomatous). She started SSA Octreo-Ratiopharm 20 mg therapy (monthly injection). However, liver metastases have increased compared to February 2020 and to May 4. MY QUESTION; a BIOPSY was never made and will be made in mid-June 2020. is it correct that from February to June she never had a biopsy?
I would like to hear more about what your sis is going through and what help she found?
NETs (particularly paraganglioma) are dangerous tumours to biopsy as they can potentially cause a massive release of adrenaline into the body.
I’ve been diagnosed this type of tumor on anterior mediastinum from biopsy. Doctor still couldn’t determined size of tumor and stage from CT and petscan.(not 68a -dotatae). They just know it’s localized. They would like to go ahead to have open chest surgery. Should I go ahead with surgery?
Cancer must be defeated!
I was diagnosed when going in for what we thought was a kidney stone and ct was done .. I have stage 4 its in my lungs, my liver , my peritonal and small intestine and my lymphnodes....Im 63 and lanreotide shots are the treatment. My oncologist say that my tumors are inoperable...
Sandy where are you being treated?
@@christinecoffey7451 I am a patient thru Anderson Cancer treatment Ctr. in SC
Get a 2nd opinion at the Mayo clinic@@christinecoffey7451
❤❤❤❤❤
cannabis flavored ice cream.. lol
So is this a subset or classification of pancreatic cancer or lung cancer or colon cancer?
No. Neuroendocrine tumor is its own cancer type, based not on where it occurs in terms of organs, but in terms of cells. It starts in the body's neuroendocrine cells, which are located throughout the body. netrf.org/2018/11/07/pancreatic-neuroendocrine-cancer-vs-pancreatic-cancer/
NETRF thank you for the clarification
This doctor is not serious. He's always joking. NET s are incurable as of now.
R&D , clinical trials are on.
A prolific speaker indeed highly confident and overbearing but this time it’s more of semantics rather theatrics and less of academics.