what treatment did you use?Most people get diagnosed at stage 4 sadly like my mom also.,....I am so happy that you are stable:)And where was your neuroendrocrine tumour?
@@Србомбоница86 I had bland treatment in the beginning because the cancer invaded 80% of my liver, I take octreotide every three weeks and it helps with the symptoms and I just completed last year PRRT treatment and my tumor shrunk remarkably
I was diagnosed may 29th 2019...The ambulance driver told me the hospital approved my insurance...After being in the hospital for 11 days I get the news I never was approved....My life now is trying to deal with this disease w/o insurance and the doctor bills that are still coming ...#THANKYOUGODFORMYLIFE🙏🙏
I have neuroendocrine cancer, plus I have neurofibromatosis type one. I have multiple neurofibromas on my skin, which is different than neuroendocrine tumors, but it doubled my chances of getting neuroindercrine cancer. Well that day came and I just had a whipple procedure for ampulla of vater neuroendocrine carcinoid cancer. My surgeon said he got it all an didnt think I needed chemo. But a ct scan now shows a 1cm growth on my left adrenal gland which my surgeon did not tell me about, either because he was given a preliminary reading due to the ct scan was to rule out infection due to I developed a fever after going home from surgery or he didnt read the full report. Luckily we have a NETs foundation right here in Louisiana, I called them last week and already they have set up Gallium Scan and an appointment with a surgeon. Im feeling better about things but still scared.
1000% I self diagnosed with Cushings Disease. I considered carcinoid syndrome. All me myself and I. Cortisol testing and workup was denied for YEARS. I am so angry. I have lung involvement, chronic cough and wheezing but normal chest X-ray. I’m wanting to test 5-HIAA to ensure no lung involvement. I am going for IPSS soon.
65+ and I live in MD and had a unrelated CT Scan on 9/29 that suspiciously indicates a small intestine NET. Just had a good colonoscopy yesterday . . . no problems but you can only get so far up there . . . could not get anywhere near the small intestine. I have a very good surgeon of unknown NET experience, at least to me and I am waiting for a date to get this out before it gets any larger . . . slightly less than an inch now. Concerned about future follow up meds and what to watch out for? and how? ( timely tests )? going forward because timing is everything. Want to avoid symptoms. Living on pins and needles to say the least.
Hi Terri, thanks for your kind words about the Balancing Act TV show. Here's an infographic that might be helfpul for you: www.carcinoid.org/wp-content/uploads/2015/07/NET-Cancer-inforgraphic-Nov-2016.pdf. Please give us a call if we can be of help in any way.
Hi Terri, here's some additional information that we hope is helpful: www.carcinoid.org/wp-content/uploads/2015/07/NET-Cancer-inforgraphic-Nov-2016.pdf. You are always welcome to give us a call if you'd like to chat, 888-722-3132, EST.
Hi Najia, please be in touch by phone, 888-722-3132, Eastern Time, or email, info at carcinoid.org and we can answer any questions you might have. You are not alone!
I have stage 4 Neuroendocrine and I'm been stable for 7 months now. (thank god)
what treatment did you use?Most people get diagnosed at stage 4 sadly like my mom also.,....I am so happy that you are stable:)And where was your neuroendrocrine tumour?
@@Србомбоница86 I had bland treatment in the beginning because the cancer invaded 80% of my liver, I take octreotide every three weeks and it helps with the symptoms and I just completed last year PRRT treatment and my tumor shrunk remarkably
I was diagnosed may 29th 2019...The ambulance driver told me the hospital approved my insurance...After being in the hospital for 11 days I get the news I never was approved....My life now is trying to deal with this disease w/o insurance and the doctor bills that are still coming ...#THANKYOUGODFORMYLIFE🙏🙏
I have neuroendocrine cancer, plus I have neurofibromatosis type one. I have multiple neurofibromas on my skin, which is different than neuroendocrine tumors, but it doubled my chances of getting neuroindercrine cancer. Well that day came and I just had a whipple procedure for ampulla of vater neuroendocrine carcinoid cancer. My surgeon said he got it all an didnt think I needed chemo. But a ct scan now shows a 1cm growth on my left adrenal gland which my surgeon did not tell me about, either because he was given a preliminary reading due to the ct scan was to rule out infection due to I developed a fever after going home from surgery or he didnt read the full report. Luckily we have a NETs foundation right here in Louisiana, I called them last week and already they have set up Gallium Scan and an appointment with a surgeon. Im feeling better about things but still scared.
Tam I am praying for you. Be strong and let the foundation take the lead for you. XO
1000% I self diagnosed with Cushings Disease. I considered carcinoid syndrome.
All me myself and I. Cortisol testing and workup was denied for YEARS. I am so angry. I have lung involvement, chronic cough and wheezing but normal chest X-ray. I’m wanting to test 5-HIAA to ensure no lung involvement. I am going for IPSS soon.
65+ and I live in MD and had a unrelated CT Scan on 9/29 that suspiciously indicates a small intestine NET. Just had a good colonoscopy yesterday . . . no problems but you can only get so far up there . . . could not get anywhere near the small intestine. I have a very good surgeon of unknown NET experience, at least to me and I am waiting for a date to get this out before it gets any larger . . . slightly less than an inch now. Concerned about future follow up meds and what to watch out for? and how? ( timely tests )? going forward because timing is everything. Want to avoid symptoms. Living on pins and needles to say the least.
Great video! This might be what is wrong with me.. sounds so familiar!
Hi Terri, thanks for your kind words about the Balancing Act TV show. Here's an infographic that might be helfpul for you: www.carcinoid.org/wp-content/uploads/2015/07/NET-Cancer-inforgraphic-Nov-2016.pdf. Please give us a call if we can be of help in any way.
Hi Terri, here's some additional information that we hope is helpful: www.carcinoid.org/wp-content/uploads/2015/07/NET-Cancer-inforgraphic-Nov-2016.pdf. You are always welcome to give us a call if you'd like to chat, 888-722-3132, EST.
I was just diagnosed a week ago
Hi Najia, please be in touch by phone, 888-722-3132, Eastern Time, or email, info at carcinoid.org and we can answer any questions you might have. You are not alone!
I was just diagnosed with Neuroendocrine neoplasm two days ago going in for ct scan