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Atypical carcinoid tumour of the lung

Posted by auntiemum @auntiemum, Apr 4 6:02pm

Hi, I live in part of the U.k. and had an op to remove an atypical carcinoid tumour from my inferior lobe at the end of February, so I’m still recovering. The issue is, the tumour was lost after being removed and as a result wasn’t tested for further anomalies. I was diagnosed via lymph node biopsy as the tumour was sat too far down in the lung to be reached during the broncoscopy. I don’t see my consultant for another couple of weeks. I know it sounds unbelievable and I wish it wasn’t true, but apparently it’s the first time in the history of the hospital’s pathology department that they couldn’t find a removed tumour. I had a ct scan and an octreotide scan so it’s not inside me, so that’s a relief. I’m not interested in taking a case against them as I know the surgeon has an excellent reputation and sometimes things just go wrong. My main concern is survival, but has anyone ever had something similar happen to them?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

pb50 | @pb50 | Apr 7 7:37pm
In reply to @auntiemum "Thank you so much for your response and support. You’ve already made me feel better. I’ll..." + (show)
@auntiemum

Thank you so much for your response and support. You’ve already made me feel better. I’ll definitely copy all those questions and ask them, as all that’s been going through my mind, is what happens now. I’m new to the sight and wasn’t aware there was a more specific group so that’ll certainly help. I had put off reaching out for help as I didn’t want to be bombarded with horror stories, so this is great.

I spent 12 hours in A&E yesterday as I have an impacted bowel, which the dr suspects I was discharged with. I was vomiting and unable to eat from the day of the operation and have lost two stone since 29th of Feb. But I’m taking the treatment now and can feel it working. Honestly, although there have been mistakes made, I’m incredibly grateful for our NHS, as they still try their very best to help patients.

That’s why I’m more concerned about my health that blaming individuals. This, to me, was an honest mistake/accident rather than an outright act of negligence. My surgical consultant stated it’s never happened in the history of the pathology department.

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That is a really healthy and productive perspective. You say you are taking treatment now. Is that for the post surgical symptoms or are you referencing chemo?

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