Just got the news… stage 2 Carcinoid tumors

Posted by james8117 @james8117, Sep 10 10:02pm

Nothing like going to the Mayo for a routine prostate MRI only to be told you have 2 carcinoid multi focal tumors each plus about a dozen much smaller in Ileum and scattered subcentimeter densities in the liver with 2 nodal matastas each 1.1×1.1cm. All of this confirmed next day with a CT. Never been told I have cancer so I’m in shock a a scared. I go back to Jax Mayo in a few days for 2 days of tests. Anyone have a similar diagnosis, what become of it. Thank you in advance

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) group.

Hello @james8117 and welcome to Mayo Connect. I can certainly understand your surprise at the diagnosis of NETs/carcinoids. A lot of us with NETs, have had the same experience. In my case, I was having a routine upper endoscopy and the first carcinoid was found in the duodenal bulb. Since then, I've had two more surgeries for carcinoids in the same location. I've never had any carcinoid symptoms. I'm assuming that you probably did not have any symptoms either.

As you are new to this diagnosis and to this discussion group, I would like to invite you to the NETs support group which meets virtually, via Zoom, on the first Thursday of each month at 5:30 p.m. EST. I will put your name on the list to receive information about this meeting. We often have a speaker who is on the staff of Mayo, Jacksonville, and we also have time to share with each other. It's a great way to get answers to your questions and not feel so alone.

I'm glad to hear that you are being evaluated at Mayo in Jacksonville. There are very good NET specialists there. Do you know yet what doctor you will be seeing or what specific tests you will be having?

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@hopeful33250

Hello @james8117 and welcome to Mayo Connect. I can certainly understand your surprise at the diagnosis of NETs/carcinoids. A lot of us with NETs, have had the same experience. In my case, I was having a routine upper endoscopy and the first carcinoid was found in the duodenal bulb. Since then, I've had two more surgeries for carcinoids in the same location. I've never had any carcinoid symptoms. I'm assuming that you probably did not have any symptoms either.

As you are new to this diagnosis and to this discussion group, I would like to invite you to the NETs support group which meets virtually, via Zoom, on the first Thursday of each month at 5:30 p.m. EST. I will put your name on the list to receive information about this meeting. We often have a speaker who is on the staff of Mayo, Jacksonville, and we also have time to share with each other. It's a great way to get answers to your questions and not feel so alone.

I'm glad to hear that you are being evaluated at Mayo in Jacksonville. There are very good NET specialists there. Do you know yet what doctor you will be seeing or what specific tests you will be having?

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Wednesday I am having a colonoscopy and a double balllon something, I’m assuming endoscope? During this I guess they will take tissue samples and see if there are other issues not detected by MRI and CT last week., from there I’ll meet the gastro Dr and hopefully the surgeon to go over the next step. I still feel Nauseous, not because I have any symptoms, nauseous because this is has come as a total shock. The good thing so far is from the day that the carcinoids were found to the colonoscopy and ednoscope will be 7 days. I pray that I have no other issues with colon area and again I pray that with surgery the cancer can be removed

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@james8117

Wednesday I am having a colonoscopy and a double balllon something, I’m assuming endoscope? During this I guess they will take tissue samples and see if there are other issues not detected by MRI and CT last week., from there I’ll meet the gastro Dr and hopefully the surgeon to go over the next step. I still feel Nauseous, not because I have any symptoms, nauseous because this is has come as a total shock. The good thing so far is from the day that the carcinoids were found to the colonoscopy and ednoscope will be 7 days. I pray that I have no other issues with colon area and again I pray that with surgery the cancer can be removed

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Hello @james8117,

I can certainly understand the feeling of nauseous due to the surprise of the diagnosis.

Will you post any other concerns or questions you have prior to your tests on Wednesday?

REPLY
@hopeful33250

Hello @james8117 and welcome to Mayo Connect. I can certainly understand your surprise at the diagnosis of NETs/carcinoids. A lot of us with NETs, have had the same experience. In my case, I was having a routine upper endoscopy and the first carcinoid was found in the duodenal bulb. Since then, I've had two more surgeries for carcinoids in the same location. I've never had any carcinoid symptoms. I'm assuming that you probably did not have any symptoms either.

As you are new to this diagnosis and to this discussion group, I would like to invite you to the NETs support group which meets virtually, via Zoom, on the first Thursday of each month at 5:30 p.m. EST. I will put your name on the list to receive information about this meeting. We often have a speaker who is on the staff of Mayo, Jacksonville, and we also have time to share with each other. It's a great way to get answers to your questions and not feel so alone.

I'm glad to hear that you are being evaluated at Mayo in Jacksonville. There are very good NET specialists there. Do you know yet what doctor you will be seeing or what specific tests you will be having?

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Hi Teresa,
Can you put me on the list to join the zoom meeting as well? I have recently been diagnosed with NET. What a shock!
I am going to Sloan Kettering for treatments. I am not sure what is in store for me. I am trying to take one day at a time, but that is easier said than done.
thank you for your imput.

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@carolc66

Hi Teresa,
Can you put me on the list to join the zoom meeting as well? I have recently been diagnosed with NET. What a shock!
I am going to Sloan Kettering for treatments. I am not sure what is in store for me. I am trying to take one day at a time, but that is easier said than done.
thank you for your imput.

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Hi @carolc66

You are on the list! As a newly diagnosed patient I'm sure you will find the support group meetings helpful. Mark your calendar for the first Thursday of each month. We meet, via Zoom, at 5:30 p.m., EST. The meeting is facilitated by a social worker from the Mayo Clinic facility in Jacksonville, FL

It's a great way to meet others and learn more about this rare disorder.

Is your appointment at Sloan Kettering scheduled already?

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@hopeful33250

Hello @james8117,

I can certainly understand the feeling of nauseous due to the surprise of the diagnosis.

Will you post any other concerns or questions you have prior to your tests on Wednesday?

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On a Thursday a MRI on my prostrate showed suspicious cancer in the small intestine my urologist then went to work setting up other appointments for the beginning of the next week. On the following Tuesday I had a CT with contrast and yes I have about 10-12 small carcinoid tumors show up on the scan, and a 8mm lesion on my liver was present. On Wednesday I had a colonoscopy and a double balloon endoscope through my throat into my small intestine and my colon. No other areas of concern were noted. The cancer appears to be in a lower 1/3 of my Ilium part of the small intestine. I do have 2 metatasitc nodes by the affected area that measure about 1.1cm each. Colonoscopy was clean. later Thursday I another MRI on my liver to get more info on the suspicious lesion. The MRI showed clear cysts and no areas of concern. Today is Friday and now I have an appointment with a surgeon for the next step towards surgery. The biopsies have nit come back from Wednesday yet but my GI is confident it will be carcinoid tumor cells. Its scary but now I know I only have 1 area of concern I do feel more relieved. The Drs say it very slow growing in most cases and this infected area should be able to be removed with surgery and expect to be in the hospital for about 3-9 days depending on the extent of everything.

REPLY
@james8117

On a Thursday a MRI on my prostrate showed suspicious cancer in the small intestine my urologist then went to work setting up other appointments for the beginning of the next week. On the following Tuesday I had a CT with contrast and yes I have about 10-12 small carcinoid tumors show up on the scan, and a 8mm lesion on my liver was present. On Wednesday I had a colonoscopy and a double balloon endoscope through my throat into my small intestine and my colon. No other areas of concern were noted. The cancer appears to be in a lower 1/3 of my Ilium part of the small intestine. I do have 2 metatasitc nodes by the affected area that measure about 1.1cm each. Colonoscopy was clean. later Thursday I another MRI on my liver to get more info on the suspicious lesion. The MRI showed clear cysts and no areas of concern. Today is Friday and now I have an appointment with a surgeon for the next step towards surgery. The biopsies have nit come back from Wednesday yet but my GI is confident it will be carcinoid tumor cells. Its scary but now I know I only have 1 area of concern I do feel more relieved. The Drs say it very slow growing in most cases and this infected area should be able to be removed with surgery and expect to be in the hospital for about 3-9 days depending on the extent of everything.

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I really appreciate your follow up post, @james8117. I am glad to hear that the MRI showed clear cysts, that is good news and I'm sure you are relieved about that.

Yes, carcinoids are slow growing. My surgeries were several years apart and so far, no metastasis. I hope that your appointment with the surgeon will give you more information on the type of surgery and the length of the hospital stay.

I'll look forward to hearing from you again after your meeting with the surgeon. Do you have any more questions or concerns?

REPLY
@hopeful33250

I really appreciate your follow up post, @james8117. I am glad to hear that the MRI showed clear cysts, that is good news and I'm sure you are relieved about that.

Yes, carcinoids are slow growing. My surgeries were several years apart and so far, no metastasis. I hope that your appointment with the surgeon will give you more information on the type of surgery and the length of the hospital stay.

I'll look forward to hearing from you again after your meeting with the surgeon. Do you have any more questions or concerns?

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Just scared, nervous, you know all the emotions. I wonder how long I will in the hospital for when they remove the 8-12in of small intestine and 2 nodes, will they grow back, will I be cancer free ( from this cancer ), lots of questions that I know only the surgeon can attempt to answer. I seriously just want a big crown and coke to relax but I am going to be a good 52 year old white male and not have any alcohol until the Dr says I can have a stiff one. I speak with him in 36 hours. JIM

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@james8117

Just scared, nervous, you know all the emotions. I wonder how long I will in the hospital for when they remove the 8-12in of small intestine and 2 nodes, will they grow back, will I be cancer free ( from this cancer ), lots of questions that I know only the surgeon can attempt to answer. I seriously just want a big crown and coke to relax but I am going to be a good 52 year old white male and not have any alcohol until the Dr says I can have a stiff one. I speak with him in 36 hours. JIM

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I had 12" of my small intestine removed 12 years ago because of carcinoid tumors, at Jacksonville Mayo. I had suffered gastro symptoms for about 10 years, with no good answers, until I called Mayo on my own. They saved my life. I was in the hospital three nights, I think. The tumors had metastasized, but have not caused me any problems since. Recovery was really easy, because for the first time in years I felt well. No pain, I could eat anything, I started gaining back the weight I had lost. Good luck with your treatment and recovery.

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