Waiting for diagnosis - feeling terrified

Hi AKAFS

So very sorry that you have cause to be on here.

I appreciate that this is a very worrying time for you, and will have come as an awful shock.  This wont help but the majority of us on here did not present with the 'usual' symptoms.  The testing process will seem to go on forever; however it is very necessary in order for your cancer team to put together the most effective treatment plan for your cancer.'

The following are my three main pieces of advice for 'Newbies' on here;

Firstly, Lung Cancer s no longer the automatic death sentence it once was.  Over the last 20 years or so, new treatments have been developed plus 'old but effective' chemotherapies have been made kinder in terms of side effects.

Secondly; Please do not look up survival rates as they are based on 10 years worth of data that was collated at least 2 years ago,.  Therefore they do not fully take into account the improvements made to treatment options.

Thirdly; Have hope. There are many of us on here who are successfully living with Lung Cancer or like me have survived Lung Cancer..

I hope this helps a little bit.  Good luck with the testing process and I wish you the best possible outcomes.

Kegsy x

Thanks for posting this reply.  I am also at the start of my diagnostic journey.  I have had a chest xray, followed by the dreaded phone call, and have my CT on Thursday next week.  If confirmed, this will be my third cancer!   Firstly, blood cancer diagnosis 8 years ago... still on treatment.   Then base of tongue cancer 3 years ago... still healing after radiotherapy... now this.  I am told most likely a bit of tongue cancer that got away during treatment and ended up in the lungs.  I seem to hardly get over one before another hits.  Like most people the assumption is that lung cancer is 'the big one', so it is really good to hear how far treatment has progressed.   Once I know which cancer type I have ( I am assuming squamous cell for now), I will be back to ask about treatments available and what to expect.  But anyway, thanks for the reassuring words!

Kegsy 

Thank you for your reply. It’s so hard not to google stuff especially when you don’t have any experience of lung cancer. My mother and sister have both had breast cancer but it was caught very early. I don’t know anybody who has or has had lung cancer which is why I’ve joined this group so it’s good to hear you are a survivor. My biggest worry at the moment is that I’ve had hip pain for over a month, seen 2 different physios and nothing is helping. Having read that lung cancer can spread to the hip bones has really scared me. I know I need to wait for all the tests and results but I can’t stop my mind going over it. It’s really really hard to distract myself. But your reply has given me a bit of hope. 

AKAFS this must be a really horrible time for you.  But don't panic yet.  I had a little cough in 2017 and a 7 cm mass was found on my right lung too.  Like you, I thought I couldn't survive.  I gave myself 2-4 months and got my affairs in order.  But once you're in the system, you will go through all the scans and tests and then you'll receive a treatment plan and then suddenly you can feel hope.  So 7 years on, I've had surgery, chemo, radiotherapy and more chemo and immunotherapy, and here I am.  I've just been discharged from care.  So lucky.  Have hope.  Today there are so many treatments available.  Best best wishes.  

PamelaAnne

Thanks for your reply. You are right - I know I’ll feel better once I have a precise diagnosis and am in the system. It’s the uncertainty at the moment plus the shock. Then jumping to the worst case scenario.  I wasn’t sure if I could come on this site before having a firm diagnosis but I’m very glad I did as the responses have really helped. I have told a couple of friends but don’t want to tell family until I know what I’m dealing with so was feeling very isolated. 
Thanks again

I am in the same place. Chest xray, followed by CT scan and then the dreaded news. 4.7cm mass in right lung. Been for biopsy and PET scan 10 days ago and now awaiting results and prognosis. Just feel so scared and don't know where to turn. Diagnosed with bladder cancer 8 years but that was nothing like this. 

Hi Elena

That’s a long time to wait for the results. It must be torture. I’ve got my PET Scan tomorrow then more tests later in the week. What’s helped me a little bit are messages from people in this group explaining there are lots of new improved treatments out there. It is all too easy to think of the worst case scenario and get really frightened. I’ve stopped reading stuff on the internet as it was making me sick with fear. I do understand how you are feeling and am keeping my fingers crossed for you.

Thank you. I've not told everyone yet. I feel like I'm stuck in a bad dream. I'm sure it will hit me once I have the results and prognosis. The thought of the treatment is so scary as well. I dont know who to talk to. I'll cross my fingers for you too and wish you all the best x

I’m the same  - told a couple of friends and also my sister but want a prognosis before telling anyone else. It makes you feel so isolated so it’s really good that this group exists.
Like  you I keep hoping it’s just a bad dream and you’re right  the thought of treatment is very scary. Hopefully we can support each other. 

Joining you too - multiple very small nodes on CT; guided biopsy failed so awaiting wedge resection in week or two. Very sCary please to be x