I was diagnosed with Stage 1 lung cancer this week. Reading so many moving stories on this forum only makes me feel more like a fraud. My cancer is relatively small and localised, and surgery is likely to completely remove it. I have never even had any symptoms, and they weren't looking for it when they found it.
I was diagnosed with an autoimmune disease, Myasthenia (though it may turn out to be Lambert Eaton Myasthenic Syndrome, or LEMS, a staggeringly rare condition that can be triggered by.... you guessed it - lung cancer), a couple of months back. It is only because the consultant was following his nose in trying to work out what had triggered that, that I ended up getting a CT scan on my thymus gland, which happens to be in the chest. They found a 2cm nodule, and a subsequent PET scan and biopsy confirmed a T1bN0M0 diagnosis. When I was diagnosed with Myasthenia it was a shock, not least because I had no idea what it was, but in truth it has saved my life. I am so low on the risk factor ladder that I would almost certainly have avoided any screening, and the cancer would have advanced undetected. They certainly didn't suspect LEMS when they sent me for the scan.
My friends and colleagues reaction to the diagnosis has basically been the same as mine would have been 30 years ago, but it doesn't seem to match with the condition I have. I find myself trying to explain to them that, honestly, it's not as bad as it sounds. It feels like I should be more concerned, and maybe I am just blocking out my feelings, but I don't want people giving me sympathy when so many people have it so much worse than I do. They just think I am being brave or pragmatic, which actually makes it worse.
Does anyone else with the early stage diagnosis have similar feelings?
Written by
Nick_Ed
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Hello, I remember feeling just the same when I was diagnosed in January 2020. I was stage 1, no symptoms and a lobectomy removed the cancer. I tried to explain to everyone that as lung cancer goes I was very lucky! However, you have every right to be here, this forum is very useful to answer any questions you may have (however daft they may seem) and you never know what will happen or how you will feel so getting your support network in place early, just in case, seems like a good idea. Good luck with your treatment!
ahhh mate, what a selfless person you are. You have every right. However big or small it is awful. All I can say is well done for not letting it get the better of you and good luck with your treatment x
no you have everright to be here i had something similar a 2cm shadow on right upper lobe found purely by chance whi h in the end after biopsy was a sarcoma .i had it removed last week by vats a resection in one day out the next just waiting for follow ip now .good luck with uour journey ypu will be in good hands
so grateful to read that they caught yours at such an early stage. Any time they do I believe it is a victory for those of us who advocate for lung cancer.
When people try to tell me I am brave I tell them it is not a matter of what is brave or not. We do what we must to survive. No less. The surgery you have to remove this is not a walk in the park but people don’t have to know what you have and what you have been through. Cancer is something you have. You are not your cancer.
Thank you for sharing your experience and your thoughts. Many others will read it and feel less alone.
The thing about cancer is that it makes you appreciate what you already have, and to make the most of the life you have. I have incurable lung cancer (but hoping it can be treated and held at bay for as long as possible). Stay happy and count your blessings. There are plenty of blessings when we stop to think about it and I feel very lucky to still be here and feeling well. Keep your positive attitude, it will help you and your friends/family.
Nick, I have felt the same way at different times. Mine was also a small nodule, found by accident, removed via lobectomy. This May marked 3 years since my diagnosis.
First, the diagnosis was scary, and then the lobectomy was hard to heal from. This forum proved invaluable as a place to get support, encouragement and information.
Second, as someone else already mentioned, this experience has led me to become an advocate for early detection. What a difference it would make to so many if they, too, had been diagnosied early. We are living proof of this dramatic difference.
I'm glad you're here, and you have already proved to be very helpful by bringing up the connection between LEMS and lung cancer. Thank you.
As you continue down the road of treatment and recovery, please stay in touch and let us know if you have any questions. And please let us know how your condition improves after your cancer is removed.
It is great news to hear that your cancer has been caught early at stage 1, this process will have been a very traumatic time for you going through investigations and waiting for results it’s a rollercoaster of emotions and it will all have happened so quickly that you will only now be coming to terms with it.
As you can see from the previous replies it is not an unusual to feel this way.
A recent post also recommended the MacMillan counselling service, this is something to consider now or that you can revisit in the future if you ever feel that you need to talk through how the impact of the cancer diagnosis has made you feel
If there is anything else you would like to discuss please do not hesitate to contact us at email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600
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