Benign carcinoid tumor in bronchi tube

@jessie1990 Same advise from my doctor with the exception of finding 3 more. I'm battling the pain from surgery. I posted earlier it maybe nerve damage. I'm going to keep going for acupuncture and then back for another CAT in 4 weeks. So glad your news was good! 🙏 it stays that way.

@jessie1990
Great news and that sounds right for typical lung NETs. They monitor with CT scans and those are quick and easy. After the first couple years you’ll likely only have an annual scan.

@jessie1990 It is super scary. That is completely understandable. Don't beat yourself up over it too much though. I have tried. Not only does it not work, it is bad for your health. The more anxious that I become, the worse I feel. I had to learn this the hard way. Again, much easier said than done.

@tomrennie yes @tomrennie I feel so much worse I'm constantly on high alert it's exhausting

@nannybb
A regular PET scan looks for high metabolic activity because cancer cells use a lot of glucose. It typically is run with a CT at the same time that also picks up tumors. My largest lung NETs used more glucose and lit up.

Then there is a special DOTATATE Ga68 or Cu64 PET scan that is designed specifically to find smaller and hidden NETs as it looks for somatostatin receptors. Not everyone with NETs has these receptors. Turns out I don’t so the test did no good for me. Darn. This is another reason to see a NETs specialist to get targeted tests specific to NETs.

@jessie1990 what do you typically do to manage your anxiety?

@nannybb
I’m sorry you’re in pain. You’ve been told a lot of things by your surgeon that have you scratching your head and you’re in pain so a second opinion sounds worthwhile. Even though your surgeon says he knows all about NETs, is he part of a multidisciplinary NETs team? If not, find one who is so they can review your case as a specialized NETs team. If nothing else, you’ll feel better if both doctors agree.

I’m seeking a second opinion on an afib procedure right now because I’m hoping for a more encouraging opinion and plan. If not more encouraging, I’ll at least feel better knowing the first plan and prediction are sound.

@nannybb I actually get the Dotatate Ga68 pet scan for my pancreatic neuroendocrine tumors that have spread throughout my body. I light up like a christmas tree. It is easy to see where my cancer is. Like @californiazebra suggested, a NET specialist can help you determine, sometimes through trial and error, what tests and scans work best for you. Unfortunately, there isn't a one size fits all for diagnostic testing and scans for NETs. It can be a process. The specialist will know this process way better than other oncologists.

@tomrennie I attend mental health services here I'm also on medication but don't find it really helpful and since all this happend me in July I feel so much worse so I'm hoping when it's removed and I'm removed my anxiety will settle down

@nannybb I too am scratching my head. You should have confidence in your doctor's decision making ability even if you don't agree. Do you?

Nerve pain isn't fun. Nerve pain is part of my life. I have neuropathy from chemo primarily in my hands and feet. I also have had three cortisone shots in my lower back and two in my neck for nerve pain. I eventually had lower back surgery about 25 years ago to alleviate most of the nerve pain in my back, right hip, leg and foot, since the third cortisone shot didn't work. It can be a challenge to minimize. Like cancer, different things work for different people. Keep doing acupuncture if it is working. I know it is a tremendous help for others. If it stops working, try the cortisone shot. Four out of the five that I have had really helped. Keep moving forward the best that you can. That is all that we can ask of ourselves.