Replies to @kdubbs DIPNECH sounds much scarier than it is. Sloooowww growing. You’ll be around for a long…

Discussion

Neuroendocrine Tumors (NETs) | Last Active: Sep 23 10:46am | Replies (17)

Comment receiving replies

@californiazebra

@kdubbs
DIPNECH sounds much scarier than it is. Sloooowww growing. You’ll be around for a long long lonnnnngggg time. Even if it turns into lung NETs they will likely be slow growing typical carcinoids like I have. We’ll grow old together. I’ve had all this for decades. I had the DOTATATE Ga68 PET scan and it turns out I don’t have the somatastatin receptors needed for NETs to show up on that scan so no more DOTATATE scans for me. But Octreotide still works to calm my DIPNECH cough and other issues. You’ll do great!

Jump to this post

Replies to "@kdubbs DIPNECH sounds much scarier than it is. Sloooowww growing. You’ll be around for a long..."

kdubbs | @kdubbs | Sep 16 11:12am

Thanks for the encouragement & reassurance. I had silently prayed to connect with others who have this because the road ahead can feel daunting, especially when you don’t know anyone with this; or when you haven’t spoken with an oncologist to get the “lay of the land” to know what I’m up against. I feel so encouraged. Feel free to message me anytime.
~k

VIEW AND REPLY