Newly diagnosed (partially)

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Hello all,

i had a routine lung cancer screening, which showed up 3 abnormalities in different lungs.  

At initial respiratory consultation he said i needed pet/ct scan and biopsies before they can formally diagnose me, but didnt deny the likelihood that at least 1 was malignant.

I had the scan and lung function test and had f/u appointment this morning.  So i will have a needle biopsy of left lung on what was described as adenocarcinoma next wednesday, followed by surgery to remove it before xmas.  It’s only stage 1 (13.5mm) but right on the edge of the lung and protruding into the pleura, which is why they will defo remove it.

Something at the back of my throat lit up during the PET, so i’m being referred urgently to ENT and having a head  scan when i go for my biopsy.

The right lung bronchoscopy is being left until after left lung surgery.  It’s also believed to be malignant, but unrelated.  It was first seen 15 years ago, but not thought problematic.  It was 18mm then and is now 31mm, so is seen as slow growing and less urgent than left lung.

My big worry in relation to the biopsy is that i have an insensitivity to  local anaesthetic (a feature of Ehlers Danlos syndrome, which i have).  Sometimes L.A. just doesn’t work, other times i need multiple injections of it. Fall back position is that it would be biopsied at same time as surgery if they can’t numb me next week. 

I’m also worried about having to tell other people.  I had thought i would wait until after the biopsy result,but as its being removed whatever, there’s no reason to wait.  Also i keep having rehearsal conversations going round and round in my head non stop.

Apologies for the length of this ramble.

Good wishes to everyone

  • Hello and sorry to hear what you're going through right now. It’s a lot to deal with on your own so can i suggest you call the lovely folk at MacMillan who I’m sure will be on hand with advice and support.
    With regard to your worry about local anaesthetic being ineffective due to your Ehlers Danlps condition, perhaps you could request twilight sedation but if it’s done at the same time as your surgery you’ll be under general anaesthetic. Discuss this with your specialist. 
    i’m sure your head must be spinning with all that’s going on and others in this group will no doubt respond with support and advice. 
    Apologies not needed at all. 

  • Thanks for your reply, comments and suggestions - very much appreciated.

    although i haven't heard the term twilight sedation, i think i must have had that when i had a spinal cord implant a few years ago - i have no memory of it, unlike a endoscopy i retchedn my way through, desperate to tell them to stop, but unable to!!