Oh my dear Pauls1977; it is awful to live with this fear.  Therre are a number of breast cancer ladies who post on here who also live with the possibility of its return.  They - in the main- appear to cope by preparing for the worst by which they make their will, write letters to be given to their grandchildren, mentally stick two fingers up to cancer and determine to enjoy whatever life they may have.    Cancer has caused you enough problems, don't let it screw up what may be a long life - you just don't know.  If cancer ruins every living moment it hasn't half won.  Not having had cancer myself - I came to this forum after losing too many family, friends, neighbours......... - I am impressed by this approach which seems to work well..  Please read some of the posts here, join in the conversations, I am sure it will help you to chat with others who know exactly what you are suffering.  I hope others will come and chat with you also.  Annie

Annie,

Thank you so much for taking the time to reply.  I am really grateful and will take your suggestion amd have a look at the posts.

Best wishes

Paul

Hi Paul

I'm in a similar boat but had my operation in Nov 2017 and it was atypical so much more likely to recur, I know exactly how you feel as I have the same anxieties.  I'm sure it's common throughout the world of cancer in general to fear it's return so I guess we've just got to grin and bear it, not easy when it even gets in my dreams. My follow up yearly scans are only on the chest too which worries me as I know it could migrate to other parts of my body, I will talk to my thoracic dept about this again when I have my interim xray in a months time. It's a massive operation followed by a year of pain and uncertainty of the future, I guess we'll always have these worries and just be grateful and relieved after every clear scan.

You're not alone Paul take care

Jas

Hi all, 

I have been diagnosed with typical carcinoid of the lung in April 2019, literally 4 days before my only child turned 1. I was 37y old then. I was devastated. I had lobectomy in June which was successful and the prognosis were very good. I had post op complications and was readmitted. Remaining part of my lung kept collapsing or partially collapsing until October. I was and still am in horrendous pain. I have all the symptoms like I did prior to surgery. Also been diagnosed with Fibromyalgia.... although prognosis are good I worry. I fear this feeling of worry will never leave me and constant pain is a horrible reminder that this is real! I try to live to the fullest for my family, specially for my now 1.5years old son but some days I can't even pick him up. I suppose what I'm trying to say is... try to enjoy your life and do know that you are not alone and that if you like you can message me. For real, it's important to know we are not going through this alone. Wishing you all the very best in life. 

Hi Paul,

Just wondered how are you feeling these days? 
I wish I found your post way back in April this year.

Kind regards

Kasia

Hi Kasia,

Thank you for asking.  It's a bit of a mixed bag really.  Physically I probably feel better now than I have in about 10 years.  I run, go to the gym. Great.

Mentally I fall down a bit really.  Every day I'm body acanning, scrutinizing every ache, pain or bodily change.  I do wonder if it'll ever go away. 

In May I had a CT scan as part of my follow up and it was clear.  They don't want to see me again for 2 years.  Already I dread that appointment, knowing its 2 years since they saw me and a lot can change in that time.  Also, I'm very aware that at that point I will be in the timeframe that is considered for the tumour most likely to return.

Have you had the same sort of thing?

Hi Paul,

yes, very much. My lobectomy was in June this year. I had post op complications so for me the physical recovery was very slow and in fact I have long way to go. I have limited movement in my arm as a result of surgery and all sort of pains throughout my body. My thoracic surgeon team think it's Fibromyalgia. Chest/breathing is not the same. I am aware that it will be a lot longer before I am able to exercise etc but mental struggle is overwhelming! I scan and scrutinize everything in my head just like you. I even look in the mirror to see if anything is different trying to reassure myself. It's hard and sometimes I genuinely think that the cancer is back or that it's some other type of cancer. Then worry passes for a moment and for example I get sore throat the next day and I freak out...and this worrying goes on and on. I spoke to a nurse while back and she told me this is happening to a lot of people and it seems to get worse prior to scans and appointments, but as to why I feel like this all the time she was unable to answer.  
Another nurse told me that the trauma of this experience causes this sort of anxiety and that I should try talking therapy. But I don't have enough energy to do that at the moment. 
 

Have you tried talking therapy? What have you tried? How do you cope with it? Any suggestions would be much appreciated? 

And thank you for your message Paul.

Kasia 

Hi Kasia,

It sounds like you're really going through it.  I can only sympathise. I didn't have the physical aftermath you had but experienced all manner of aches and pains in different places.  I found that this was the case until very recently.  So, if mine was relatively straight forward, with complications I can only hope you see some relief eventually.  I have a friend who has fibromyalgia and I can't begin to imagine how the combination of both must be getting to you.  Have you seen a pain specialist?  (Cant remember the proper name for them).

Mentally, I had counselling with MacMillan.  I liked being able to talk and they were very quick, but found in the longrun it hasn't helped the anxieties.  I meditate which sort of helps short term and brings temporary relief from thinking too much.  I was in the queue for CBT with the local service but kept getting pushed down the list because I'm a shift worker and it makes it difficult for a therapist.  They recently offered an online CBT, so basically texting a therapist.  This starts Monday so can't offer judgement on that.  As for wondering why we feel like it all the time, personally I think its because I lived every day thinking I was invincible. This showed me I wasnt.  I was luckier than many.  But I certainly wasn't invincible any more.  It brings your vulnerability to the front of your mind.  That is just my personal view.  How we get rid of it?  No idea.  But it seems as though in this day and age there are options which can only be a good thing.  The difficult thing is finding the one thay works for you.

Best wishes 

Paul

Hi

not sure if you will see this but I am waiting for a lobectomy as typical carcinoid. I already suffer from fibromyalgia and I'm terrified of the pain afterwards.

i had a bronchoscopy which was horrendous and sent me into a massive fibro flare.

i was unhappy to see your post op complications too.

i'd love to know how you're getting on. Hope you are well