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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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@californiazebra I had taken Atticus to several vets who kept wanting to run tests for gastrointestinal issues. There were occasions when he threw up his food. I tried so many different brands. He finally started doing well on a cheaper cat food...go figure. But as I watched him eating he seemed to be only chewing on one side of his mouth. Back to the vet again. This time they picked off some tartar build up on his back teeth and said everything was fine. It wasn't. He stopped grooming himself which was something he was fastidious about. I found another vet. The first thing she did was lift his tongue. He had a horrible open sore tumor. Putting him down was one of the most difficult experiences in my life. I HATE cancer.
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2 Reactions@tomrennie Yes, yes, yes. I looked up both doctors immediately. All of the information you have sent has been highly helpful and greatly appreciated. I am looking into all of it. I had no idea where to start until you shared. Thank you so much! I had an appointment right after I looked up the site. Sorry for the delay in responding. (I also had to get my walk in)
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1 Reaction@californiazebra Did you get my reply to all your excellent information? It was extremely helpful. How do you know so much? (if you don't mind my asking).
@nannybb
I’ve read all of your responses, but I did not see a previous one regarding OHSU or the local support group but I see you already have an appt with local NETs specialist so that’s great.
As for any medical knowledge I may have, I’ve always researched my medical conditions since I first had access to medical books in college. I always had a wide array of medical issues including many rare ones. I feel being informed is the only way to be an advocate for yourself, ask good questions and know when a doctor is missing the mark. I also know doctors have limited time to spend on each patient and often don’t know much about rare stuff. No one is willing to spend more time on my case than I am. My primary doctor once told me, “I learn something new every time I talk to you.” I also research for friends and relatives especially those confused my medical stuff.
When I was diagnosed with lung NETs, I couldn’t figure out why 20 doctors in several specialties over 12 years were baffled by my 50+ lung nodules and guessed incorrectly. And why did most lung NETs patients only have only one tumor? I kept researching and told my local breast oncologist I finally figured out what else I have — DIPNECH. I handed him a retroactive study Mayo did on 59 DIPNECH patients. There are only 300 documented cases. Super rare but likely underdiagnosed. He had never heard of it but thought I was onto something. Of course the lung NETs team at the university hospital an hour away was familiar and made the official diagnosis along with lung NETs. They coordinate with my local oncologist for the octreotide shots. Researching DIPNECH is actually how I stumbled upon MayoConnect.
I recently asked an electrophysiologist a specific outcome question about my likely cardiac ablation coming and he responded, “I don’t know because no one has ever done a study on YOU.” I thought to myself, “I have.” 😊
You are a delight! I love your enthusiasm and your sense of humor. I always wanted to be a nurse, but got as far as an MA. I am fascinated by medical issues. The head of OB-GYN where I worked, often brought me in to see weird and rare cases. I learned alot, mostly about how naive I was at 22.
I have always been good at weeding through Doctors. This cancer diagnosis has had me baffled however. I've had many operations, but was never at peace with this one. I researched the Dr. throughly. It became uncomfortable when I had my son go with me to the second appt. with more questions. The doctor seemed annoyed, but my son liked him. I should have listened to my own feelings.
I'm wondering, how did Dipnech in your case present? Were you made aware you had multiple tumors and THEN you researched further? How long ago were you diagnosed? What test verified that you had NETs, let alone over 50? I'm intrigued.
@tomrennie I don't no how to upload pics of mine 😊 he is gorgeous 🥰
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1 Reaction@tomrennie omg this post is so emosh 😭thank you so much
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1 ReactionThese are my fur babies
@nannybb
I agree with you that medical stuff is interesting. I wanted to be a veterinarian growing up because I loved animals. Unfortunately I’m allergic to most so that was off the table. I could have started a poodle (hypoallergenic) clinic. Haha
I’ll answer tomorrow about how DIPNECH and lung NETs presented. My screen froze and I lost the first response.
@californiazebra my daughter wants to be a vet she loves animals also ❤️ I've another question to ask I've had mri pet/ct and all the rest will I need more tests before surgery or will it just be pre op assessment
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