neuroendocrine carcinoma stage 3

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neuroendocrine carcinoma stage 3

by n2cats on Sat Nov 07, 2009 08:08 PM

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My ex husband and father to my children was recently diagnosed with stage 3 neuroendocrine carcinoma. He had severe shoulder and back pain. He started to lose feeling in his arms and legs. A scan at the ER showed a mass on his lung that had wrapped around his spine. It was compressing his spinal cord. The doctors did surgery that same evening to remove the tumor. He has developed Horner's Symdrome from the interference with the sympathetic nervous system. He is doing chemo and radiation on alternating days for seven weeks. The chemo is platnium based I believe. He has recently had a PET scan done. I don't know the results yet. This is as much information as I have now. Can someone help me understand this type of cancer better and provide me with information on the prognosis?? Thanks in advance for any helpful information.

Julie

RE: neuroendocrine carcinoma stage 3

by isandra07 on Thu Dec 31, 2009 09:06 AM

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hi i have carcinoid cancer also, diagnosed one yr ago...had chemo also...you need to find specific oncologists for this rare cancer...mine primary site unknown, liver mets 11 tumors.....i live in nj/nj  found a great dr. warner nyc...he has a website, check it out. dr. richard warner...the good thing about neuroendocrine tumors...heard people can live for decades with this...need to find right doctor...should be on low dose of chemo with combination of sandostatin drugs...for hormonal balance....octreoscan should be performed....esp w/carcinoid tumors..... any more ? feel free to ask...it took one yr.  before i realized this is livable with the right doctors/meds...i am 47 yo....sandra never heard carcinomas have staging?  only cancer that shouldn't be staged.........hope i helped alittle julie

RE: neuroendocrine carcinoma stage 3

by isandra07 on Thu Dec 31, 2009 09:06 AM

Quote | Reply

hi i have carcinoid cancer also, diagnosed one yr ago...had chemo also...you need to find specific oncologists for this rare cancer...mine primary site unknown, liver mets 11 tumors.....i live in nj/nj  found a great dr. warner nyc...he has a website, check it out. dr. richard warner...the good thing about neuroendocrine tumors...heard people can live for decades with this...need to find right doctor...should be on low dose of chemo with combination of sandostatin drugs...for hormonal balance....octreoscan should be performed....esp w/carcinoid tumors..... any more ? feel free to ask...it took one yr.  before i realized this is livable with the right doctors/meds...i am 47 yo....sandra never heard carcinomas have staging?  only cancer that shouldn't be staged.........hope i helped alittle julie

RE: neuroendocrine carcinoma stage 3

by Jenholm25 on Sat May 08, 2010 02:03 AM

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Julie,

I too have stage 3 carcinoid cancer.  Stage 3 means that it's spread to the lymph nodes in the same "region" or general area of the primary tumor.

I can't help much on the prognosis.  I've been searching for those answers as well with widely varying results.  From what I can gather, it looks like there is a 67 - 75% recurrence rate within 8 years.  When/if it comes back, it can come back at any stage. Overall life expectancy is 10 - 15 yrs from diagnosis if it can all be surgically removed.

Mine is midgut carcinoiid cancer so I've been researching info along those line.  I'm not sure if it the same for stage 3 lung primary.

I hope this helps.

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