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Profile picture for Zebra @californiazebra

I have typical carcinoids and DIPNECH (50+ nodules) so they can't remove them. The largest one was destroyed with ablation. I have a CT scan every 4-6 months w/ and w/o contrast, but again my stuff is active. I talked to a lady who a one huge (9 cm) typical carcinoid removed via lobectomy at 70 years old and she had one CT scan each year for 10 years and never had another issue. Could breathe fine, no problem. One and done. No other treatment. The oncologist wanted to stop scans after 10 years, but she wanted to keep going. I haven't talked to her since to know who won that battle. Best of luck to you. Hope you're the one and done like most with everything in a single lobe are.

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Replies to "I have typical carcinoids and DIPNECH (50+ nodules) so they can't remove them. The largest one..."

@californiazebra looks like you are in CA? Who are your specialists? I am recently diagnosed with Dipnich after my surgery to remove a 1.1cm typical carcinoid in my RML as well as surrounding lymph nodes. Out of 7, the 3 closest were positive as was an area of my RLL near the tumor. That was also removed and I was told the surgeon got clean margins. I’m told I will likely need the injections for the rest of my life. I’m a single mom to a teen and in my early 50’s.