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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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@jessie1990
Hello Ireland. I just googled and found this:
Yes, Ireland has neuroendocrine tumor (NET) specialists through a national center and regional satellite centers. The National Centre for Neuroendocrine Tumours is located at St. Vincent's University Hospital in Dublin, with satellite services in Cork and Galway.
National Centre: The St. Vincent's University Hospital in Dublin serves as the main hub.
Regional Centers: There are additional experts at the Mercy University Hospital in Cork and Galway University Hospital.
How to access: If a NET is suspected, you should ask your GP or consultant for a referral to the NETs Clinic at St. Vincent's.
I hope you can get a referral.
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2 Reactions@californiazebra I attend a specalist in mercy University hospital I'm back there on 16th of Dec I'm waiting on surgery is cork University hospital still didn't get a date for that yet
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3 ReactionsHello @jessie1990
I did an internet search, as did @jessie1990, and found St. Vincent's University Hospital, which is a NETs Center of Excellence. Here is a link to their website, https://www.stvincents.ie/departments/national-centre-for-neuroendocrine-tumours-net/
As @californiazebra mentioned in her post, NET specialists often consult with your local oncologist to support your treatment. I drive an hour from my home to a university medical center in my area for consultations.
I look forward to hearing from you again. Will you continue posting updates and let me know how you are doing?
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2 Reactions@hopeful33250 are these tumors curable
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1 Reaction@jessie199yiy
You will have a long life with carcinoids. They are very slow growing. In 3?years they have not found any growth in mine
I also was told not to worry about chemo. So far chemo has not shown any effect on carcinoids
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2 Reactions@ggiinnaa I have been on chemo for over three years to shrink and control my NET tumors and lesions that started in my pancreas and spread primarily to my liver. It is working for me.
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1 Reaction@ggiinnaa did you not have yours removed doc told me I could leave mine there but it will cause issues when I'm older as they are very slow growing but they do grow and it will cause alot of infections and breathing problems
@tomrennie did you not have yours removed
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1 Reaction@jessie1990 I did not have any removed. There is too much of it. I have it in my bones as well. It made me very sick. It was tested to see how fast it grows. Mine grows pretty slowly. So, chemo was the best option for me. Fortunately, it worked. I am still here to talk about it. By the way, I am a wee bit Irish myself. My mother's maiden name is McGrory.
@tomrennie do you have many tumors?? My grandparents are from uk we'll my grandmother was my grandfather is from donegal I was born in Cork city