Lung Carcinoid

Hello all.

Considering what I am aware people go through with this awful disease I feel almost fraudulent posting on here but to be honest I don't know where else to turn to.

I was diagnosed with a Typical Lung Carcinoid in 2016 which was successfully removed in May of that year following a lobectomy.  I was told it was completely removed and the Lymph nodes they removed tested negative.

Throughout the whole experience I was told it would never come back, there is a 3% chance of it coming back, I have a 90% chance of a 5 year survival, there is less than 1% chance of it coming back and finally last year on my follow i was told I wouldn't worry too much about it coming back.  I am not criticising the doctors or the NHS by any means.  They were superb and I will remain forever grateful to them.

My problem lies with not with the physical scars but the mental ones.  I constantly worry its going to come back despite very promising comments from my doctor.  I am sat writing this with my latest anxiety running mad.  I am having funny sensations in my chest.  Not pain per se.  No pneumonia, i even went to the gym this afternoon and managed to run for 20 minutes.  So why am I constantly anxious. 

I would love to hear if anyone suffers similar anxieties and what you do to help control them.  I try rationalising, occupying my mind and have even had counselling. 

I hope this is the right forum for this post.  I apologise if it isn't.   And thank you for taking the time to read this.  

Much love to all.  Paul

  • Hi Grendebo13,

     

    Firstly, I am really sorry to hear of your Carcinoid.  Even more sorry that the apprehension and anxiety you must be experiencing now is exacerbated by your fybromyalgia.  I cannunderstand why you would be concerned.   Do you know when your lobectomy is??

    I am 7 years post op almost and was discharged by my surgeon in May 2021.  Last CT scan showed no return and he said at 5 years it is most likely to recur so discharged me.  So far so good.  Feeling fit and well touch wood and sofar as i can tell all is good.  Fingers crossed it stays that way.

    Has your surgeon got anything in place to mitigate the risk of pain and added stress on you post operation?

    I hope you are ok and all goes as well as can be.  My thoughts and prayers are with you and everyone else going through anything like this.

    Paul

  • Hi

    thank you for replying, my surgery scheduled for 21st april.

    have advised them how bad I was after the bronchoscopy so they know I'll need more pain meds.

    also don't want to spend too long in hospital as I won't sleep and again that flares up my fibro.

    just trying not to worry too much

    d

  • Hi D,

    It's good that they are aware and hopefully they can have everything in place to make you as comfortable as they can.

    21st.  Not long to go.  I couldn't wait to get it done and get the damn thing out of me and start again.  Good that you're not to wait too long.

    I bet you are worried.  It is a concerning time.  I hope you can find the thing that brings you comfort and gets you through.

    Paul