Welcome to the NETs Group! Come say hi.

Posted by Teresa, Volunteer Mentor @hopeful33250, Jan 20, 2017

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.


I actually finished my chemo and radiation treatments and I had surgery to remove the rest of the mass that was in me. The surgeons had to plicate my right diaghram due to the cancer destroying it. I had part of right lung removed, reconstruction of my vena cava and open heart surgery. I also have a sternum lock in my chest due to the damage the radiation did to my rib cage.

In regards to the scans, I have scans done every 3 months. They were going to just continue to give me chemo but after discussing my case at a tumor board they decided to just go with the CT scans. I had a scan done last week and there was no signs of cancer however, they discovered some other issues which would explain some other complications I have been experiencing. One of the stents they put in me is blocked. I had been experiencing pain on my right side they couldn’t explain until my scan showed that one of the sternum lock staples apparently fell and is sitting in my side. They also saw that my right lung is not opening fully. I have an appointment with the thoracic surgeon in a couple weeks to discuss what was found on the scans and although it hasn’t been mentioned I suspect they will need to perform surgery again.

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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.

In reply to @emma19 "Hello all" + (show)

Hi @emma19, how are you? I look forward to learning more about you and your neuroendocrine tumor journey.

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