New and very unexpected Diagnosis of Lung Cancer

Hi Aquarius

Welcome here! I am pleased you found us.

I am sorry to hear of your diagnosis and what a shocking one for you. It is good that they took your symptoms seriously and the tests were done.

It does seem to be moving quickly for you there, which whilst waiting for the tests results is the most gruelling bit of mental torture for this, they do seem to be letting you know things quite quickly.

We sit by our phones like meerkats on hot coals when we are awaiting a call don't we? I found the best thing was to do was at least try to distract myself. Weirdly, I hate housework... though whilst waiting for results I was off cleaning kitchen floors.... all sorts... anything to keep busy.

For me I would want to ask these questions at this meeting coming up:

The type of lung cancer that you have, non small cell or small cell?

The stage of your diagnosis?

Does your sample have any markers or mutations (this won't make much sense for now, but it does open up different treatment regimes).

What treatment plan they have in mind for you? (write down the names, so you can look into them after the meeting).

The one thing I always suggest to people before they leave is to ask what happens next? When is that likely to happen? If it doesn't appear to be happening, who do I contact to chase it?

Quite often, people can come away wondering these things you see so it's good to know their intentions and you can look up/ask about what to expect at the next bit.

Thank you for your reply it's been very helpful. 

I agree the waiting is the worst part I'm already surprised with how quickly things happened this week.

I will be like a meerkat waiting at this phone and wondering what happens next. I've done a little bit of research these last couple of days but keeping away from Dr Google that's for sure. 

Apparently I've already had a request put in for a PET scan so that should be happening soon too. I feel I'm on safe hands but I just want to have this call quick so that my husband can get a better understanding of what to expect and then we will be having a chat with our youngest child. I think I will ask his older brother and sisters to be there too when we do this as he often speaks to them about other things. At the moment I feel a bit guilty that he is the only one that had been told but it was a decision we all agreed on as I haven't got enough information about what is happening yet. It was hard enough telling my older children who are all on their mid 20s but they are like me just waiting to hear more this week. 

Thank you again for your reply and I'm very keen to read other peoples experiences of this. You all seem very supportive and brave talking about this xx

Hi aquarious

so sorry you find yourself with this horrible disease.  I left telling my my girls, 8 and 10 at the time, until I could give them some answers.  It’s surprising how just much they know at a young age and the questions they asked really shook me up. They both dealt with it in different ways but I was glad I had waited until I could at least answer some of the questions.

Good luck with the PET scan and treatment.

take care.x

hi aquarious  when you get your appointment think you need someone else with you as it can be tough taking it all in. make sure you get nurses phone number to ask questions.  wishing you well.

I had lung cancer 7 years ago.  I’d had breathing problems and went to the hospital and they did a chest X-ray and a CT scan.  After my PET scan my surgeon was 75% sure that it was cancer.  He removed 1/3 of my upper right lung and the lymph nodes using the DaVinci method.  It was 1a and my lymph nodes were clear.  I also had head to toe CT and a bone scan.  

I know it’s a scary time but I remained positive that all would work out.  I didn’t let myself dwell on it ...I kept myself busy.  This was my second cancer.  My children are are grown and I told them right away.  With younger children I wouldn’t tell them at this stage.

good luck 

well done suzy. nice to have a positive result.  

Hello and welcome to a forum no-one wants to be part of.

Gina has given you excellent advice and I will add one more thing that my brother told me (he lost his wife to a brain tumour a couple of years ago) and that is to write down questions when you think of them, as they all seem to fly out of your head when sat in front of the Oncologist.

I've heard a few people say this about how much young children know about this these days. But like you I think it's so much better to be prepared to answer any questions he may have. I just feel so "all over the place" right now because I dont have the answers for myself right now. I would be lying if I said I didnt feel guilty that everyone else knows and he doesn't. It's hard. I just wish this week would hurry up and I got the call to say when I need to come in for the chat. 

How have you been since your diagnosis and how long did it take for treatment to start xx

Hi Derek

Thank you for tour reply. 

I met my lung cancer nurse last week on Wednesday however unfortunately I was alone at this appointment as I didnt expect to be given the news I got. I had it in my head that i had a bad chest infection. I have her phone number but I haven't called her yet. My consultant said last week that my husband should come to this appointment this week with me. I'm making a list of questions tomorrow as I've been keeping myself busy last two days. Think I might have over done it a wee bit as I've been having quite alot pain and feeling more breathless. I will keep you all posted once I get more information as I'm sure I will have many more questions for you all. 

Thank you again x

Hi Aquarius

They may not know your treatment plan until the PET has been be done and results back. Sorry, but just so you prepare that they may not have all the answers. But the biopsy will tell them the type and mutations and markers. PET results are quick they say 3 days, usually they turn them around in two.

Once diagnosed it is in the NICE guidelines that treatment should start within 60 days to give you an idea of that.