What is your neuroendocrine tumor story? Let's share!

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Patients Neuroendocrine tumor

What is your neuroendocrine tumor story? Let's share!


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@Xbundle‍ great news!! Is the surgery just removing the tumor or is there more involved?

What is your neuroendocrine tumor story? Let's share!


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@Kimba5368 from what I'm understanding it's just cutting deeper to be sure they got all of the tumor out. I'll need yearly colonoscopies afterwards.

My surgeon set me up with a medical oncologist because I expressed my anxiety about not knowing as much as I'd like so I have an appointment with them as well soon

I also made an appointment with a surgical oncologist that specializes in GI tumors on my own

I want to request a scan to make sure there is no cancer anywhere else.

I also suggest to you calling to be seen early. My appointment was originally for this Friday but I couldn't deal with not knowing so I called and got my date moved up. Def see if u can because it's the not knowing that was driving me a bit crazy

What is your neuroendocrine tumor story? Let's share!


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@Xbundle That’s really great news! When is your surgery scheduled? Is it laparoscopic? 

I made an appointment with a cancer center and I’m meeting with them in a couple of weeks. I just wanted to see a specialist in addition to the surgeon I’m meeting with. So I’m meeting with a medical oncologist and surgical oncologist as well. 

What is your neuroendocrine tumor story? Let's share!


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@Kimba5368 it will be through the anus into the rectum to remove more tissue to be sure they go the whole tumor. I will be scheduling on the 27th and hopefully surgery very soon after. 

I can't wait to hear good news from u too. I'm here if u need to talk 

What is your neuroendocrine tumor story? Let's share!


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I had 2 bb size  Masses in my spine and they merged into one    As a tumor in my brain  It was only said to me it was a endo Tumor.  The sergeant went in and took it out said it was not cancer I still have problems with headaches.  58 staples later its out of my head thank God. I'm pretty sure some of my issues with my health are still related to this I also have lots of spine problems was born with spinabifida I have severe skin problems  as well and have had terrible headaches since I was a little girl. I just really don't understand all this and why I have this 

What is your neuroendocrine tumor story? Let's share!


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@Xbundle‍ i met the surgeon the other day and he said they’ll need to go in laparoscopically through my belly button and remove the tumor aNDA about 1.5 feet of my small intestine as well as the lymph nodes around that area. I’ll be in the hospital for 2-5 days and then recovery is 1-2 months or so. Surgery is scheduled for 9/23. I am meeting with another surgeon at dana farber cancer institute on 7/28 to hear what they have to say. This type of cancer doesn’t respond to chemotherapy and radiation so surgery is really the only option. I assume the surgeon at Dana farber will say the same thing but I just want to make sure. 

What is your neuroendocrine tumor story? Let's share!


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 Hello

I was diagnosed in April  2021. I have been waiting on a pet scan for 2 months now and then I will have surgery after that. I am very confused because everything I have been reading on the american cancer society says that the tumors can be removed but can come to. I also have carcinoid Syndrome and the doctors keep telling me that once the tumors are removed that I will be fine but everything I reading says the opposite. Any advice would helpful.

Thank you

What is your neuroendocrine tumor story? Let's share!


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@Xbundle I was in a similar boat back in March. I had been coughing for over a year, pneumonia back to back, assumed the coughing was from pneumonia scarring and allergies. I got covid in February this year, thank God or else I never would have found the 9.5cm typical carcinoid in my right lung. In April I had a lobectomy that removed my middle and lower lobes. I am cancer free as of right now, first scan in October. But I worry every day that the doctors missed something or my body has grown something new. You're not alone. I'm 28 and never even had my wisdom teeth removed let alone thought about having a lobectomy. I was beside myself for weeks, and I often still am. I can only hope it gets better. I've found comfort in talking to others who have been in this same situation and convince me that I'm not dying. Hearing the word "cancer" changes a person in ways that nothing else can. In some ways, I'm grateful that I can see what is truly important to me now and what I need to change. 

I hope speaking to people helps you too and shows you that you will be okay. I was having a religious struggle prior to my cancer but too many signs surfaced during my struggles that have helped me believe again, and I take solace in my faith as well.

What is your neuroendocrine tumor story? Let's share!


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@Jamiemomma there's no explaining it... But know you're loved and im thinking of you ❤️❤️❤️

What is your neuroendocrine tumor story? Let's share!


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@Kimba5368  I'm always all for a second opinion! I'm happy you're finally scheduled so this can soon be a bad memory. If u need to talk my messages are always open. Love  and support ❤️❤️❤️❤️

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