neuroendocrine carcinoma stage 3

7 Posts | Page(s): 1 

neuroendocrine carcinoma stage 3

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

Quote | Reply

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

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 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

Quote | Reply

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.

RE: neuroendocrine carcinoma stage 3

by nanamcallister on Thu Mar 14, 2019 03:22 AM

Quote | Reply

HI, I AM TURNING 43 IN A FEW DAYS BUT KEEP WONDERING HOW MANY MORE BIRTHDAYS I WILL END UP HAVING!? JULY 2018 I FINALLY FOUND OUT WHAT A LOT OF MY STOMACH PROBLEMS WERE BEING CAUSED BY "NEUROENDOCRINE TUMORS IN MY SMALL INTESTINE" SEVERAL WEEKS AFTER SURGERY I FINALLY HEAR I HAVE STAGE 3 CARCINOID CANCER BECAUSE IT HAD SPREAD INTO MY LYMPH NODES! HERE IT IS MARCH 2019 AND I STILL HAVE ONLY HAD THE SURGERY AS TREATMENT EVEN THOUGH I'VE BEEN BATTLING CARCINOID SYNDROME FOR MONTHS!  I MET WITH MY ONCOLOGIST FOR THE 2ND TIME YESTERDAY AND YES I DID SAY 2ND TIME AND HE DID FINALLY OFFER ME SOME INJECTIONS TO POSSIBLY EASE SOME OF THE SYMPTOMS!!!  NO MATTER HOW MUCH PAIN AND DISCOMFORT I HAVE BEEN EXPERIENCING NO ONE SEEMS TOO CONCERNED WITH FINDING ANY ANSWERS! I LIVE IN OKLAHOMA AND AS OF YET I HAVE NOT FOUND AN ONCOLOGIST THAT SPECIALIZES IN CARCINOID CANCER.  I CANNOT GET ANY REAL ANSWERS TO ANY OF MY QUESTIONS AND I'M LOSING HOPE THAT I WILL FIND ANYONE THAT CARES ENOUGH TO HELP ME FIND ANSWERS!

RE: neuroendocrine carcinoma stage 3

by baxtersdad on Sun Apr 14, 2019 05:03 AM

Quote | Reply

HI i am brian i have the same kind of cancer you have had surgery about almost 8 years i get tested every year so far cancer free due you still have tumors are were  they all removed .I am lusky i live close to boston i go to Danna farbar my doctor only see people with cancer like us it is very inportant to have the right doctor for this rare cancer lot of people have her for a secound doctor just to consalt with your doctor just to make sure you get wright treatment she can work with your doctor over the phone so you do not have to come to boston check her out DR Jennifer chan boston hope this helps respond to me with any question brian

RE: neuroendocrine carcinoma stage 3

by vjpers on Fri May 17, 2019 08:49 PM

Quote | Reply

I was diagnosed with stage 3 carcinoid cancer in 2010 following years of stomach issues.  Surgery removed my primary tumor from the small intestine, as well as a few others, but it was already in my lynph nodes.  Two years later it had metastisized to my liver.  Another surgery was done to remove the tumor from my liver and to take out some more small intestine and my gall bladder and apendix (just in case it moved there).  Went along pretty good for a few years, then in 2016 it had move to my ovaries, so we took those out.  This year during my annual scan in January, they found another tumor in my liver, which was removed in March.  Four surgeries in 9 years, but I am told this is the most efficient treatment for carcinoid.  My Doctor's have been excellent in keeping up on new developements to treat this type of cancer, and I am feel very optimistic about the future.  Mind you, I was pretty devastated when they found that it had metastisized to my liver the first time.

7 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.