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Benign carcinoid tumor in bronchi tube
Hi I've been diagnosed with a benign typical carcinoid tumor in my bronchi tube in right lung was found when I went to A&E with pneumonia back in July of this year I've had 2 bronchoscopys 2 biopys which showed benign carcinoid tumor I was sent for ct scan mri scan and pet scan pet scan was clear I was put under general anesthetic as my lung specialist said he might be able to remove tumor by going down my throat instead of haven surgery but didn't work but he was able to take 40% of tumor out as it was blocking my air way that's how pneumonia set in the 40% he removed also came back benign carcinoid 1 lymph node was removed and checked also clear now I need surgery to remove the rest I'm so confused as doctor said its a benign tumor then Google is telling me it's a low grade cancerous tumor but doctor nor lung specialist said anything about cancer just said its benign doesnt benign mean non cancerous and can any one tell me how surgery went thank you bless you all xx
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@nannybb
Mayo Clinic has NET specialists at all three of their locations. For appointment information, click on this link, http://mayocl.in/1mtmR63. You can send in your records and have a video conference with a doctor. I usually get all of my bloodwork and scans done in the morning at one of their two locations in Arizona, drive home, then review the results with the docs later that day by video. That's just an example.
Here is a list, from the Carcinoid Cancer Foundation, of NET specialists in the U.S. and worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
I see that there are two in Portland. Maybe they could be a good local place for you to start?
I just know what you are going through is hard enough. I can't imagine going through it with a care team that you don't believe in. I feel very lucky to have a team that I trust.
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1 Reaction@jessie1990 Thank you so much!
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2 Reactions@californiazebra How do I find a doctor who specifically specializes in Carcinoid tumors? My surgeon has not once referred to them as "NETS." Do darn frustrating. I HAVE to get back to work.
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1 Reaction@jessie1990 I had my beloved cat Atticus who passed in the middle of Covid with tongue cancer. I know how much it helps to have an animal friend.
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3 Reactions@tomrennie nope I was attending cbt and anxiety management but they only lasted 6 weeks 1 class a week other then that I've noting to keep my mind busy I've been like this just before covid came every single day only break I get is when I sleep and like I said since all this happend I'm like on super overdrive
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1 Reaction@nannybb ❤️❤️
@nannybb so sorry to hear that I've had a female Akita passed away during covid to from womb infection she had to be put down in vets 🥹 then I got another female 😊 she's 2 now but I have a 15 year old male to who isn't in good health so he be passing soon by looks of it 😢
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3 Reactions@nannybb my dog who passed away was roxy... now I have pola and king and milo milo is a bichon he has my heart broke his so bold 🤣🤣 I've 2 mice and a cat also and 3 kiddies 😊
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3 Reactions@jessie1990 Jessie, I just watched a YouTube video of a lady who had/has pancreatic NETS.
She has gotten through much of the emotional part by going back to exercise. She loved swimming in the past, so she joined a group who swims in the ocean in Hawaii. One day a life guard of 30 some years approached her to ask if she had cancer. He asked, because as she was in the ocean she had been surrounded by a large group of dolphins. He said in all his years he had never seen anything like it. How amazing is that?
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2 Reactions@jessie1990 You are truly blessed!! I've thought of getting another cat, but I take owning one very seriously, and if anything goes wrong, there is no one who would take my place.
I love my son's dog, but he just found out SHE has cancer $10,000 worth of tests later. As long as she seems not to be in pain, he is going to help her keep going. I'm staying out of the process. It's his beloved dog. I know he will do the right thing when the time comes. But animals are SO important.
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