1. < Neuroendocrine Tumors (NETs)
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My carcinoid tumor is inoperable: What are the best ways to control?

Posted by panorman3 @panorman3, Feb 27 5:30pm

I have a carsonid , inoperable i have had it for sometime, just now noticed. what is the best way to control. I am waiting six months to check to see how fast it is growing.

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panorman3 | @panorman3 | Oct 1 6:37am
In reply to @theresaag "I. Was dx’d with NETs of the sm bowel in 2014. Was told to find the..." + (show)
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I. Was dx’d with NETs of the sm bowel in 2014. Was told to find the best NET surgeon I could . I went to the University of Iowa, 100 cm of sm bowel removed by Dr. James Howe. Over the next few years I attended all the national conferences and learned a lot~! One takeaway was patients came and said they were inoperable. What I learned, it is the surgeon that often makes it inoperable and their abilities. Not knowing your situation, if it is still a concern, the above Doctor is the best, IMO, I am still here. Next is Dr. Eric Liu in Colorado. These 2 surgeons are able to handle most situations, even if the tumors are in the liver or near many blood vessels. This is their talent. I do not know your situation, but would highly recommend checking these docs out for second opinion. Always get second opinions.! Good Luck. Oh I am still no evidence of disease. 🙏🏻 it continues.

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@theresaag thanks i will at the next scan

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Teresa, Volunteer Mentor | @hopeful33250 | Oct 2 1:38am
In reply to @panorman3 "@hopeful33250 itis in the mesentry middle of my intestines, am feeling fine iw ill know in..." + (show)
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@hopeful33250 itis in the mesentry middle of my intestines, am feeling fine iw ill know in November if it is growing and if i have to do something about it,
Thanks and GOD bless
also looking for a second opinion

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@panorman3

I'm glad to hear that you are seeking a second opinion. Whenever you are told that a NET is inoperable, it is a good idea to consult with a NET specialist. As you probably know, NET specialists have a keen sense of what treatments are possible. Mayo Clinic has NET specialists at all three of its locations. If you are considering a second opinion at a Mayo facility, here is a link with information about obtaining an appointment. http://mayocl.in/1mtmR63.

If, for any reason, a Mayo appointment is not possible, here is a link, from the Carcinoid Cancer Foundation, to specialists in NET treatment throughout the U.S. and worldwide. https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

I look forward to hearing from you as you seek the best treatment possible. Will you post again as you get more information?

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panorman3 | @panorman3 | Oct 2 7:02am

Yes i should know in November, i wish i could talk without all the stuff and see if what they think

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tstern7 | @tstern7 | Oct 2 10:56am

Hi there! Not to worry. My colleague Mark has it too and he’s on a form of immunotherapy. Please join our next Zoom conference on Wed Oct 15, at 5 pm california time. At Seena Magowitz we are a community of survivors of NEC and NET tumors. Go to seenamagowitzfoundation,org

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panorman3 | @panorman3 | Oct 3 8:33am

Thanks, i am afraid of immunotherapy

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