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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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I'm so glad I read your post just now. I am going to see my surgeon for the second visit post-op. I had a carcinoid tumor in the left lower lobe of my lung. The surgeon did a biopsy that came back "cancer" but was vague. The surgeon assured me surgery was the best thing to have done. I did do that, about 5 months ago. I have not been able to return to work, as I am still in a lot of pain. When I had my first post-op visit, I had an X-ray ordered.
As I was stepping away from the machine, I looked up to see the X-ray was labeled "benign tumor." I asked the surgeon about it, and he said they have to write that on there so insurance will pay for it. Sorry this is so long....I pay well over $500 per month for the best supplemental insurance United Health has to offer plus Medicare. Insurance would NOT have been a problem. Quite the opposite. I am just as confused as you are. It is difficult finding information on this type of cancer as it is. I wish, looking back, I had gone for a second opinion after the initial biopsy. I'm sorry you are going through this. I can see removing your tumor if it was blocking your airway, but I would want to know why you were told it was removed because it was a benign cancer and not not just a blockage.
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1 Reaction@jessie1990
Not sure since they haven’t looked at the entire tumor. 40% is significant so hopefully that is representative of the entire tumor. I know the waiting is so hard. Worry and anticipation can be the worst part of it all.
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2 Reactions@jessie1990 My net tumors were never classified as typical or atypical. The growth rate of my pnets are measured on a ki-67 grading scale. I am unaware of any instances where the growth rate changes. Lymph node involvement usually begins near the primary tumor. I agree with your logic that if a nearby lymph node was benign, then anything further away should be the same. This is an example of why a specialist is really important. Please keep trying. We are fortunate to have the input of @californiazebra. She will help you ask more specific questions about lung carcinoids during your next appointment.
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2 Reactions@tomrennie
Thank you for your input. Typical (grade 1) and atypical (grade 2) classifications are specific to lung NETs. Typical is the slowest growing and what I have. My Ki-67 is only 2%! That’s really slow growing. Typical carcinoids are less likely to spread than atypical. The Ki-67 for atypical is higher (usually over 5%). There is also a mitotic count used. Both Ki-67 and mitotic rate are methods of determining how many cancer cells are dividing but the two measurements are not equal. The lower the better on both.
I was thrilled to hear 2% since the Ki-67 for my very aggressive breast cancer tumor was 50%. I’m telling you this to give some perspective on how slow growing typical lung carcinoids are. The Ki-67 percentage of carcinoids doesn’t generally go as high as some other cancers. Keep in mind that all cancers are not created equal. Typical carcinoids are very treatable. I’m doing very well on octreotide injections even though both lungs are filled with carcinoids. I’m even doing very well with my recurrent breast cancer. Medical advances are happening all the time. I know the unknown is scary, but please try to assume the best because I believe it will all turn out better than you think.
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2 Reactions@nannybb
Have you seen a NET specialist? That’s so important because NETs are treated differently than other cancers. You want to be treated by those who have the most experience with carcinoids.
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2 ReactionsOh, he said he knew all about this type of cancer. And he went into great detail in explaining it to me. I also saw a pulmonary specialist first. It is the "slight" deception I am having with.
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1 Reaction@californiazebra thank you so much
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1 Reaction@nannybb yes I'm so confused I really don't no what's going on ive asked my surgeon that will be removing my tumor is it benign he said yes it's benign I've had 2 biopys from 2 different hospitals both benign my pet scan came back clear it's just so confusing
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1 Reaction@californiazebra it is super hard 🥺
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1 Reaction@tomrennie thank you
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