Carcinoid cancer: Want to meet others

Posted by Ruth Ann @amyh2439, May 10, 2016

I would like to be involved in carcinoid cancer group as that is what I have.

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

dchance1 | @dchance1 | Jul 22 7:34pm

In reply to @tomrennie "When you say bio done, I don't know what that means? Where there any scans involved?" + (show)

Now I talked to the hospital today.They did a biopsy of the tumor itself, and then they won't do more scans until it all comes out... They will test what they remove again and then see what the procedure is. I'm hoping and praying, I don't have to do anything else but I don't know

Teresa, Volunteer Mentor | @hopeful33250 | Jul 23 7:39am

In reply to @dchance1 "Now I talked to the hospital today.They did a biopsy of the tumor itself, and then..." + (show)

It is a bit of a process, @dchance1, has the procedure to remove the NET been scheduled yet?
Keep posting with your questions and concerns. We are here for you!

dchance1 | @dchance1 | Jul 23 8:35am

In reply to @hopeful33250 "It is a bit of a process, @dchance1, has the procedure to remove the NET been..." + (show)

Yes, Aug 8th. Has anyone ever had it removed,( my is localized) and it never came back?

Teresa, Volunteer Mentor | @hopeful33250 | Aug 3 4:01pm

In reply to @dchance1 "Yes, Aug 8th. Has anyone ever had it removed,( my is localized) and it never came..." + (show)

Hello @dchance1,

I see that your procedure to remove the NET will be on Aug. 8, just a few days from now. You asked if anyone had a NETs removed, and it never came back. I've had three NETs removed from the duodenal bulb. It didn't appear to be metastasized as all three surgeries were in the same location. The third surgery was done at a university medical center. It was an outpatient procedure, and they used a heat procedure. As NETs tend to be very small cells, it was felt that in the previous open (invasive) surgeries that there might have been some small cells that weren't removed.

My surgeries were several years apart, 2003, 2005 and then again in 2016. Everyone's experience with NETs is quite different so it is difficult to make assumptions based on another person's experience.

Will you post again after August 8 (and of course before then if you have any questions)?

gustavo1975 | @gustavo1975 | Aug 3 4:19pm

In reply to @dchance1 "Yes, Aug 8th. Has anyone ever had it removed,( my is localized) and it never came..." + (show)

Hello how are you? My wife had one located removed in March 2024, until the last check it was stable without recurrence, now this month she has control again, so praying that everything stays the same.

I wish you good luck for Friday.

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dchance1 | @dchance1 | Aug 3 4:30pm

What is 'control again' mean.? Sorry .. so new to all of this. I am taking it means it came back and they are 'watching it' perhaps?
Thanks you for the well wishes. I am to go sometime on Friday. I do not have a time yet........sigh.. just want it done and over with. Prayers they get it all out.. with no reoccurrence EVER or any other freaking kind of the C word......... what a world wind of emotions. I have PTSD with the stuff my mom had ... wouldn't wish that on my worst enemy sigh.

dchance1 | @dchance1 | Aug 3 4:32pm

In reply to @hopeful33250 "Hello @dchance1, I see that your procedure to remove the NET will be on Aug. 8,..." + (show)

I will post as soon as I can.......... thank you for letting me know of your experience. It helps to know that I have a chance. One heards the C word... and well my mind went to the worst possible place...

gustavo1975 | @gustavo1975 | Aug 3 4:36pm

In reply to @dchance1 "What is 'control again' mean.? Sorry .. so new to all of this. I am taking..." + (show)

Hello, don't be scared. Once a NET is removed, there are routine checkups, in my wife's case every 3 months the first year and every 6 months after that year. The controls are CT scans, MRIs, blood tests and sometimes positron emission tomography (PET). I hope I have cleared your doubt

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dchance1 | @dchance1 | Aug 3 4:52pm

Continued well wishes for your wife.. I know my hubby and son are worried sick about me. I am trying to stay strong. Its just soooooo scary. Can't say that Drs have a lot to say until it is removed.....so in the meantime.. I feel like a leaf in the wind.. sigh..