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Why do I get so tired so easy?
Neuroendocrine Tumors (NETs) | Last Active: 10 hours ago | Replies (9)Comment receiving replies
@californiazebra Hey, thank you so much for your response. You have really been through a lot. I do not have as many NETs symptoms, which is most likely why it was not considered when I had my first spot on my lungs. I get out of breath, and my face gets flushed. I'm gussing my GP would not know those can be sympathetic. I also am getting the impression my GP is not all that trained in several other conditions that I have because she tends to brush them off. I have been on AI for the past 2 hours asking all kinds of questions. This cancer is more complicated than it is given credit for. Just because it is usually slow growing, does not mean we as pts. should not be told as much as possible so we can be a part of out own treatment plan. I'm wondering, do you see an medical oncologist as well as a surgeon? AI told me having an oncologist on board is a better plan in getting tests and medications sorted out. Do you have an opinion? Btw, I'm so happy the med. is working well for you! 💕
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@nannybb
Yes, my case in managed by a thoracic oncologist on a NETs multidisciplinary team. An interventional radiologist orders my regular CTs and I meet with him after each CT. I meet with the thoracic oncologist annually, but the IR will contact him if necessary. I now just added a pulmonologist on that same team who will also monitor my scans and meet with me. Since this specialty team is not close to home, I do video calls unless there is a reason I have to show up in person, like a scan or procedure. The thoracic oncologist coordinates with my local breast oncologist so I can have my octreotide shots a mile from home. I'm in and out in 20 minutes. Very convenient.
Yes, we have to be informed and be our own advocates. No one has more time to spend on our case than we do. Specialists tend to be very siloed so when we have multiple medical issues and a variety of specialists, we must take it upon ourselves to be informed to be sure one specialist doesn't interfere with the treatment of another. All this medical stuff takes up sooo much time, but it is what it is. I just go with the flow and enjoy the non-medical part of my life. It's like when we have to do our chores before we can go out and play. Best of luck. 🙂