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Any one with Neuroendocrine tumors getting the shot once a month?
Neuroendocrine Tumors (NETs) | Last Active: Jun 24 2:03pm | Replies (168)Comment receiving replies
That's amazing ! I feel very blessed an encouraged by this,The largest nodule in my lung is 2.7 mm,one consultant talked about removing it if it gets bigger which I would prefer,then the last appointment she said maybe chemotherapy which I wouldn't want personally as my mum had cancer of the stomach an had chemo I don't think I could go through it.Then another consultant said ppr if iv got that right? I'm not even sure what that is targeted treatment? but that's in the future if it does get bigger.Im sure DIPNECH has been mentioned on one of my scans ! Gosh it's all so confusing but its definitely multiple lung nodules in both lungs an typical nets.I hope your doing well with the breast cancer side of things you have been through it.Your in my prayers 🙏
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@annie12345
My largest was 2.6 cm and they destroyed it with microwave ablation 4 years ago and no regrowth. Surgical removal is the standard treatment but that’s not an option for me due to the number of nodules in all lobes. I will have two more troublesome nodules destroyed with cryoablation in September. I told him I wanted to enjoy my summer first. He said that’s fine because they are slow growing so we can walk not run in my case.
No one has ever mentioned chemo for my lung NETs so definitely get a second opinion from a NETs team before ever going that route. It is not treated the same way as common lung cancer. I like conservative treatment to preserve quality of life.
PRRT (google it) is targeted radiation thru an IV but you need to have somatostatin receptors and I don’t based on my DOTATATE scan. That seems to be more commonly used with GI NETs. Has anyone reading this had PRRT for typical lung NETs? I think it’s a pretty rough treatment.
You’re in my prayers as well.