Well, bit of a shock! Found suspected lung NET

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Hello all. 

just recently been told by consultant that shadow in my lung is suspected “well differentiated carcinoid” just at entrance to right lung. Discovered by chance as coughed up blood out of the blue and got CT scan. PET scan has shown no other shadows and bloods came up ok apparently. I’ve been told surgical resection is the preferred option after biopsy to confirm diagnosis. Trying to stay positive but struggling with the old “what if it’s not an NET” thoughts in my head and an ever present dry cough which is wearing my nerves down. Haven’t really been told much by my consultant about post op or timescales on stuff so I’m naturally a bit anxious. still, got to keep positive eh!! 

  • Hi if you've had a biopsy then I'd be comfortable with taking it as Nets. I've had 2 lung resections I'd say its about a 2 week recovery but I suppose everyone is different. Good luck xx

  • Ah, gosh, Hitch, I'm sorry to hear that. Newly diagnosed myself and it does come as a bit of a bombshell, eh? Amazes me how people can think of positivity when first getting the news so hats off to you. I'm more of the disbelieving gibbering wreck type hiding from my kids in the potting shed kicking pebbles and muttering "sod it."   Encouraging news on your PET scan though? Hope you don't have to wait too long for your biopsy and very best of luck to you x

  • Thanks. Just waiting to get the biopsy done. Hoping it’s going to be within the next month or so. No idea how long I’ll have to wait for the resection procedure after that. Fighting off the odd anxiety attack and taking it day by day 

  • I was a mess for a couple of weeks until I got my PET scan results. Consultant was pretty relaxed about it and assured me that NETs are pretty easy to treat via surgery and rarely reoccur. 

  • Oh sorry I thought you'd had your biopsy. I find the waiting is the hardest part. So I feel for you. The procedure itself is painless so I wouldn't worry about that side of of it xx

  • So I hear. rigid bronchoscpopy and biopsy under a general and in and out the hospital the same day.  I thought post op recover after resection would be about 6 weeks but i guess it depends on how much of the lung they remove?

  • Yes it is a 6 week recovery time. As in driving or getting back to work etc. But I'm talking pain wise, medication, it was about 2 weeks to feel well for me. X

  • my employer has said I can have a phased return to work so its handy to know that its weeks and not months timescale.

  • Hello. I had the rigid bronchoscopy on Thurs and now await results. Consultant came to see me once I was awake and said carcinoid but we wait biopsy results for plan. Will include resection he said though.

  • Fingers crossed for you. Did they say how long you’d have to wait for the results and for the resection surgery?