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.

Profile picture for dchance1 @dchance1

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

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I apologize for not responding earlier. I was waiting to hear maybe where your tumor is. I had 2 renal cell carcinoma removed from my left kidney last October. They initially thought total nephrectomy of the kidney, but surgeon called weekend before we were to fly out (to Mayo Rochester) & said he believed he had a 95% chance of saving my kidney. And he did! I have 90% of my kidney left, have been in for checks 3 mos after, 6 mos after and then since everything looked so good, they let me go 6 mos. So I'll see them for CT checks again in Oct. I won't lie to you; open kidney surgery took a good 2-3 mos of recuperating to the point I could drive, sneeze, pick up 10#+, etc. But it's worth it to have the 2 malignancies evicted! They did find a nodule in my right lung 3 mos after my surgery, but so far it's remained stable. Prayers for your Aug 8 surgery. It will go well; you'll look back on it as a helluva adventure, and a sense of relief. Sending hugs!

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Profile picture for gangcarotid1 @gangcarotid1

I apologize for not responding earlier. I was waiting to hear maybe where your tumor is. I had 2 renal cell carcinoma removed from my left kidney last October. They initially thought total nephrectomy of the kidney, but surgeon called weekend before we were to fly out (to Mayo Rochester) & said he believed he had a 95% chance of saving my kidney. And he did! I have 90% of my kidney left, have been in for checks 3 mos after, 6 mos after and then since everything looked so good, they let me go 6 mos. So I'll see them for CT checks again in Oct. I won't lie to you; open kidney surgery took a good 2-3 mos of recuperating to the point I could drive, sneeze, pick up 10#+, etc. But it's worth it to have the 2 malignancies evicted! They did find a nodule in my right lung 3 mos after my surgery, but so far it's remained stable. Prayers for your Aug 8 surgery. It will go well; you'll look back on it as a helluva adventure, and a sense of relief. Sending hugs!

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Thank you for an insight to your journey.. mine is 2 spots in my intestines. . One is at where the large meets the small intestines, and then another one at 5 mm. Going in on Friday fur a colon resection... scared

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Profile picture for dchance1 @dchance1

Thank you for an insight to your journey.. mine is 2 spots in my intestines. . One is at where the large meets the small intestines, and then another one at 5 mm. Going in on Friday fur a colon resection... scared

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Intestine/colon cancer is 1 of the most curable cancers when found early. 3mm is "found early" in my opinion! Sending hugs. You got this; it does not have you! Wishing you control over the stress, and looking forward to a beautiful sunrise Sat a.m. after your surgery Fri.

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I'm sorry; I misread your tumor measurement(s). ANY SIZE is too large, but im praying you have got this early; sounds like you have. My 2 carcinoma were 5+cm & a hair under 3 cm.

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Profile picture for gangcarotid1 @gangcarotid1

Intestine/colon cancer is 1 of the most curable cancers when found early. 3mm is "found early" in my opinion! Sending hugs. You got this; it does not have you! Wishing you control over the stress, and looking forward to a beautiful sunrise Sat a.m. after your surgery Fri.

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Well one on the outside is 2.5 cm. The other is 5mm

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Any size is beyond scary. Glad you are getting it taken care of. Sending hugs.

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Profile picture for dchance1 @dchance1

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

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Wishing you good luck! I’ve had 2 colon resections; you’ll be surprised how much better you feel & how fast you recover! Start walking as soon as you can. I had to have a bowel movement before I could go home, walking & moving helped. Check in when you’re able & let us know how it goes.

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Was diagnosed with stage IV with primary in Duednum and 4 tumors in liver. Been on Octreotide for entire time. October scans show tumor in liver growing to 4cm from scan 6 months prior. Had liver embolization in December with follow up scan in March showing tumor shrinking. June Pet scan showed growth and other tumor growth including primary and now on femur and pancreas. Start 1st round of PRRT treatment in 2 weeks.

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Profile picture for dchance1 @dchance1

Well one on the outside is 2.5 cm. The other is 5mm

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Good luck tomorrow.

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