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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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@tomrennie nope waiting on them to ring me he said he don't no how long I'll be waiting
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1 Reaction@jessie1990 ok. Have you tried to get an appointment with the NET specialist yet?
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1 Reaction@tomrennie I don't no how to do I just ask my lung specialist to refer me or do I just ring myself
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1 Reaction@jessie1990 I don't know how your medical system works. Is a referral usually required? Regardless, I would do both. I really think it is important for you to see a specialist. There are other NET patients that have had unnecessary treatment, like surgery, because the oncologist just wasn't familiar with our type of cancer. The doctors sometimes don't know any better. I don't want you to go through that. Please please please, do whatever is necessary to see the specialist. Ok?
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2 Reactions@tomrennie I'm going to ring my lung specialist now and see what he says I will let you no how it goes
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2 Reactions@jessie1990 great. Thank you.
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1 Reaction@californiazebra just a quick question did your typical carcinoid spread to your lymph nodes I've had one lymph node checked it was clear so I'm wondering if one was clear will the rest be clear
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1 Reaction@jessie1990 also if my biopys were benign typical carcinoid when I get surgery done do I need to worry about it been atypical as I've read its all down to final exam of the tumor
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1 Reaction@tomrennie I've rang clinic 4 times today no answer I will try ring again tomorrow I'm just wondering there was 40% of the tumor removed in Sept I've had one lymph node checked the 40% came back benign also and lymph node was also clear I'm wondering if one lymph node was clear is there a high chance rest is clear and if it was confirmed benign/typical carcinoid do I need to worry about it been atypical when the rest is removed when it's sent to be tested after removal
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1 Reaction@jessie1990
No. I do not recall having lymph nodes biopsied when I had my lung biopsy in 2020 but in all the years I’ve had the typical carcinoids there has been no indication that lymph nodes are involved. They have told me no lymph node involvement. I’ve had tons of CT scans for monitoring. Still diagnosed as stage 1 after decades.
I just read only 5-10% of typical carcinoids spread to lymph nodes.
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