Welcome to the NETs Group! Come say hi.
Hello and welcome
Let's pull up our chairs in a circle and check in with each other and talk about how we are doing with our NET diagnosis. Any new tests, meds or treatments going on for you? What about your symptom control? Any concerns you have?
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
@iverwig
That is good that they found the source of the discomfort you were having. I hope that they are able to resolve the problem with a simple procedure.
I look forward to hearing from you again with any questions or concerns.
Hi @emma19, how are you? I look forward to learning more about you and your neuroendocrine tumor journey.
Good morning!
Hi! You have an amazing Dr. would you be able to share the name? I was diagnosed with a 6cm appendix carcinoid tumor. Slow growing. First Dr. recommended right hemi also but second Dr. said that's old school and since my margins were good on my tumor that even with it being so large I shouldn't do right hemi. My dotatate scan was clear. However, I'm having worse symptoms than ever..especially bloating and severe pain on occasions when my intestines move. I've had this pain for about 20 years off and on and in different locations. It got better for about 10 years when I went off gluten (no more pain EVER), until now. I feel there's something we're missing but so far Drs don't seem worried. I'm 42 and possibly some of this is due to perimenopause. Interestingly I got my period 2 weeks early, immediately following my appendectomy. Since then, I've been bleeding sporadically, period comes every 3 weeks, etc.
Did you ever find out why? Interestingly, I was really itchy about a yr ago as well. I think it was due to my low iron levels from the appediceal tumor (that had grown into my colon).