I was just diagnosed 3 days ago with a NET to my Ileum. Waiting now to be seen by a physician to discuss my treatment options. This was a very informative video. Thank you
Thank you for this great video!! I was diagnosed with small bowel NET in July of 2020. I have lymph node involvement in the mesentery and a small mesenteric tumor. (localized mets). A PET scan done in October 2020 after I had healed from the small bowel resection showed no additional metastasis. Praise God!! A follow up CT of the abdomen and pelvis done in July 2021 (my one year anniversary) also showed no additional metastatic spread!! Again Praise God!! Thank you for such a great informative video!!! God Bless!!
The main problem with diagnosis is doctors are trained to think the patient is lying if things do not add up for them. Doctors should be health detectives. I am a PNet, misdiagnosed for over 20 years. My Neuroendocrine Cancer was not found till after it atrophied my pancreas. It is a crime what NET patients have to go through to get good care.
@@mrgordy1980 I have stopped the recommended treatment which is to be rescanned every few months. People need to understand those can also cause cancer. I also do not take the shots because they cause long term problem because they suppress all hormonal production not just what the cancer is producing. I live the best life I can. I have removed as many endocrine disruptors from my environment and diet and that for the most part keeps my tumor/cancer from producing the added hormones. The loss of my pancreas and other organ that are part of the digestive system is the hardest part. Not digesting nutrition well causes so much havoc on my body. I live is extreme pain everyday but I have a great family and support system. Thank you for asking
My husband had a net tumor recently removed from his bladder. Nothing I read about this made sense and no one seemed able to tell us more than it was an aggressive type. Thankfully I found this series. It explains simply but thourghly and answered many of our questions/that can be.
This information on NET is so interesting and I understand my problems better. Thank you. I got tumors in my liver and still been treated with Sandostatin successfully for 3 years now . I don't for how long I'm going to get the injection '
Good morning everyone. I had huge sur 9 years ago. 70% of my liver was cut out, gall bladder, and a lot of bowel had to go. I have sandostatin 30mg twice a month. I have an amazing GP who has looked after me all this time . It affected my heart, parathyroid hypertension, and severe blood pressure. Why I am saying this is I was given two years to live. 9 years later I go sailing .long distance in rough conditions. Don't ever give up, live your life to the fullest. Hubby gives me my jabs twice monthly when we flirt huge seas. My tumours have decided to play up a bit, but I don't think about it. I am 74 year old lady. I think my having double dose all this time has saved my life don't be bullied by " some" doctors. Please feel free to get in touch with me any time. Kind regards Cheryle
By chance I was DX in October 2022, mine can’t be operated on and hot flash are my worst side effect, I get a special injection to help this but is being changed to every three weeks. Another is lower extremity weakness. Godbless caregivers and patients.
Some doctors do not listen to patient's symptoms. They always say "We go by the book. Do not believe things you read on the internet" (I explained I have the same symptom as described by CDC website) As it turned out, the hospital misdiagnosed me. 3 doctors! Some drs always think they know more about the patient's body than the patient himself/herself.
I was just diagnosed 3 days ago with a NET to my Ileum. Waiting now to be seen by a physician to discuss my treatment options. This was a very informative video. Thank you
Thank you for this great video!! I was diagnosed with small bowel NET in July of 2020. I have lymph node involvement in the mesentery and a small mesenteric tumor. (localized mets). A PET scan done in October 2020 after I had healed from the small bowel resection showed no additional metastasis. Praise God!! A follow up CT of the abdomen and pelvis done in July 2021 (my one year anniversary) also showed no additional metastatic spread!! Again Praise God!! Thank you for such a great informative video!!! God Bless!!
The main problem with diagnosis is doctors are trained to think the patient is lying if things do not add up for them. Doctors should be health detectives. I am a PNet, misdiagnosed for over 20 years. My Neuroendocrine Cancer was not found till after it atrophied my pancreas. It is a crime what NET patients have to go through to get good care.
How are you going with treatment?
@@mrgordy1980 I have stopped the recommended treatment which is to be rescanned every few months. People need to understand those can also cause cancer. I also do not take the shots because they cause long term problem because they suppress all hormonal production not just what the cancer is producing.
I live the best life I can. I have removed as many endocrine disruptors from my environment and diet and that for the most part keeps my tumor/cancer from producing the added hormones. The loss of my pancreas and other organ that are part of the digestive system is the hardest part. Not digesting nutrition well causes so much havoc on my body. I live is extreme pain everyday but I have a great family and support system.
Thank you for asking
My husband had a net tumor recently removed from his bladder. Nothing I read about this made sense and no one seemed able to tell us more than it was an aggressive type.
Thankfully I found this series. It explains simply but thourghly and answered many of our questions/that can be.
Hi Cindy, my mom just had one removed from her bladder. They removed 70% of it and will need chemo and radiation. How is your husband going?
Great information thanks
This information on NET is so interesting and I understand my problems better. Thank you. I got tumors in my liver and still been treated with Sandostatin successfully for 3 years now . I don't for how long I'm going to get the injection '
Hello sir,
What is the frequency you get injection of sandostatin , whether it is month or week ?
Good morning everyone. I had huge sur 9 years ago. 70% of my liver was cut out, gall bladder, and a lot of bowel had to go. I have sandostatin 30mg twice a month. I have an amazing GP who has looked after me all this time . It affected my heart, parathyroid hypertension, and severe blood pressure. Why I am saying this is I was given two years to live. 9 years later I go sailing .long distance in rough conditions. Don't ever give up, live your life to the fullest. Hubby gives me my jabs twice monthly when we flirt huge seas. My tumours have decided to play up a bit, but I don't think about it. I am 74 year old lady. I think my having double dose all this time has saved my life don't be bullied by " some" doctors.
Please feel free to get in touch with me any time.
Kind regards
Cheryle
Thank you for this series. I am finding it very helpful and informative.
By chance I was DX in October 2022, mine can’t be operated on and hot flash are my worst side effect, I get a special injection to help this but is being changed to every three weeks. Another is lower extremity weakness. Godbless caregivers and patients.
It's just a picture but you are thru what you are saying
Some doctors do not listen to patient's symptoms. They always say "We go by the book. Do not believe things you read on the internet" (I explained I have the same symptom as described by CDC website) As it turned out, the hospital misdiagnosed me. 3 doctors! Some drs always think they know more about the patient's body than the patient himself/herself.
It's just a picture but you are thru what you are saying