Thank you all for the constant prayers as we have been navigating the crazy world of Neuroendocrine Cancer! All of our Prayers for guidance towards finding a Doctor that specializes in this have been answered!!! We will be heading towards Denver in the near future. We have an appointment scheduled with Dr. Liu. He has always been our first choice of the NETs specialists. We weren't sure if Billy would be able to see him, but it is such a relief to finally know that he can. The NETSPOT Gallium 68 PET Scan that is specifically for detecting neuroendocrine tumors is going to cost about $1000 more than we originally thought. However, it is still cheaper than any of the other places that I checked with. It will be worth it just for the peace of mind.
Dr. Liu's nurse, Pam, has been wonderful. She listened to my concerns and validated them. Then, she went out of her way to schedule an appointment for us. She said that they would do everything they could to help us try to get the VA to cover some of the charges, or reimburse us. She said they could write a letter of Medical Necessity that might help us.
Pam confirmed that it IS Cancer. She said that even if they removed the NET, and we are not convinced that they did, the probability of him having others in the future was really high. She said the best thing anyone can do is see a specialist immediately. Unfortunately, many of their patients do not get to them until the cancer is in advanced stages because so many doctors dismiss it as a harmless condition and do not monitor or treat the patients correctly.
We are so thankful that Billy's neuroendocrine tumor was found early. We are optimistic that with early detection and finally being able to see a Doctor who understands and specializes in Neuroendocrine Cancer he can beat this awful disease.
I will continue to update as we get more information. We appreciate all of your prayers more than you will ever know. God is listening and answering!! So thankful!
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