Lifespan -- possible to live a long life?

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Lifespan -- possible to live a long life?

by PleaseHelpMeNow on Sun Nov 01, 2015 07:49 PM

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Dear All:

My gut is telling me that my wife will soon be diagnosed with NET/Carcinoid (experiencing all the common symptoms: flushing; uncontrollable diarrhea; seratonin and seratonin levels above normal; abdominal pains)....She's only 33 years old....

With today's medicine and all the new drugs (including PRRT), is there hope to live a LONG LIFE til at least 80 years old?!?!!? I'm so scared for her.

We're looking to see specialits in Philadelphia. 

RE: Lifespan -- possible to live a long life?

by LauriG on Sun Nov 08, 2015 02:50 PM

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Hi there,

I was 35 years old when diagnosed and have very severe syndrome - have to keep increasing my Sandostatin treatment to manage symptoms. However, my tumours are still too small to show up on any scans. I am about the turn 41 years old. My mother got diagnosed 2 years after me (they stumbled across hers when she was having surgery for an ulcer). She does have one that shows up on scans that they have not been able to find. She was 65 years old at time of diagnosis and is still doing well.

NETs are very unique, and effect each individual differently. The first doctors I saw said I couldn't have it because to have the syndrome I would have to have multiple liver metastases - but nothing has shown up there and my liver function is fine. It is important for her to get diagnosed and started on treatment, but I would say don't start looking at life expectancy because it is too hard to tell.

Hoping your specialist trip brings you answers.

Blessings, Lauri.

RE: Lifespan -- possible to live a long life?

by ivyday on Sat Dec 05, 2015 04:36 AM

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I can offer you some encouragement. My mother experienced her first symptoms of carcinoid in March 1981--flushing, GI pain, etc. She is a nurse, and she and her friends did some research and decided that she had carcinoid. Doctors always dismissed her theory. In 2000, she switched to a new provider, who did the 5H test and diagnosed her with carcinoid .She gets sandostatin and had a debulking surgery in 2010. She's had several chemoembolizations. It is only now, at the age of 84, that doctors have told her they can no longer control the disease. But she has beat the odds before and may do so again. So, your wife could live with this and have a good quality of life for a very, very long time. I hope she does.

RE: Lifespan -- possible to live a long life?

by LindaTrue on Fri Jan 01, 2016 09:16 PM

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I am 68 and was diagnosed with Carcinoid in 2011. I had just retired from teaching and was looking forward to being carefree and traveling, etc.  At the time, I was told I probably have had it for decades and that carcinoid can go undetected, with the person living with it and eventually dying of old age or something else. It is usually slow-growing, but Dr. Wolin told me that it could "mutate" into a faster growing cancer. I just keep hoping for the best for all of us. I do get scared and sad and angry and anxious, though, and can relate to you and your wife's fears...

RE: Lifespan -- possible to live a long life?

by graciesmom on Mon Mar 07, 2016 03:21 PM

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Hi, just found this. Wondering what you found out and how she's doing. I just got back from Mayo with my mom. If you have not found a specialist, I highly recommend Mayo in Rochester. Some of the best specialists in this cancer are there and they were all wonderful! We were told by her GI  and her oncologist at home that surgery wasn't an option. Met with surgeon at Mayo the first day and said he would remove primary, with the mets and remove the cancer from the liver and restart her clock back to zero. Good luck!

RE: Lifespan -- possible to live a long life?

by realz on Thu Jul 13, 2017 05:16 PM

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Recently seeing Dr Wolin at Montefiore. How are you holding up? 

RE: Lifespan -- possible to live a long life?

by PleaseHelpMeNow on Thu Jul 13, 2017 06:20 PM

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Dear all:

Still no diagnosis...seen over 12 specialists, had countless tests including 5HIAA, Octreoscans, and a battery CT-Scans, MRIs, Colonoscopies, Allerfy, POTS Table Tilt Tests, etc.....

Everything comes back negative or too small to classify. 

So Carcinoid specialist in Upstate NY will see her without a diagnosis. 

Extremely frustrating, nearly impossible to switch GI doctors at the same hospital to get a different opinion. 

Traveling to the Cleveland Clinic in the Fall to hopefully go through some more tests and possibly get answers. Tough to sleep at night....Thanks for all the warm thoughts. 

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