on the 28 day pathway for lung cancer - waiting is dreadful

hello everyone 

My name is Caroline and I'm a 66 yr old grandmother .  I retired on the 31st Dec, and on the 5th Jan I received a call from a doctor ( not my doctor - a locum) that was a bolt out of the blue.  i had been feeling fluey and a bit rough on and off since the end of November ( but so had nearly everyone else around me - so didn't think much of it - grandkids - bugs etc  ) Was okay around Christmas and then around the 1st Jan started to feel really unwell - coughing, hot etc.  I assumed it was an infection - On the 4th went to the docs and got some anitbiotics and she asked me to go for an X-ray  - which i did.  She then phoned me the same day and more or less told me I had lung cancer .... that I had a 6cm density on my lung  - and it was very unlikely that it was anything other than lung cancer and I needed to prepare myself.  I had blood tests, all normal - but of course I know that that doesn't mean anything. I have been torturing myself ever since - convinced that I have stage 4 lung cancer .... and my anxiety is through the roof.  Can't seem to stop myself from googling every 5 minutre !  I finally had a CT scan on Monday, but was told it could be another 2 weeks until I hear anything. Which means I definitely wouldn't get a diagnosis within the timeframe

 Cancer is very prevalent in my family and if anything, i expected to get breast cancer ( my mother and 3 sisters all had it )  I had a breast reduction in 2019 and they found a LCIS - a lobula carcinoma in situ - which i understand is pre-cancer - completely encapsulated .  I was then just put back on annual breast screening  - which i've been doing for over 20 years. I am up and down, all over the place emotionally - one minute - It's okay - lets just get on with it  and the next is what is going to happen... how long have I got ... how do i tell the kids....  I'm so desperate that I know how much pain this is going to cause and I have no control .... thank you for listening. 

BTW - cough is much better , and physically i feel fine ... so confusing. 

  • Thank you so much for your kind and thoughtful words Deborah ...  it does at least sound like things are moving for you now.  I will be thinking of you on Friday and crossing all my fingers and toes.  I'm so sorry that you are not sleeping ...  I have been listening to sleep stories on the Calm App - you can get a free period - and then if you don't sign up , they seem to send you another free week ... might help ?    I do alot of crafting as well ... but you're right  - hard to focus.   I completely understand the mixed feelings about wanting to know and not wanting to know.  But once you know, you can have an idea of what you're going to have to deal with and you can prepare yourself in some way. I'm sure they will take very good care of you - and get you on the road.         I am praying for good news, as i have just been given a telephone appt to discuss the results of my CT scan last Monday - with my doctor - but not until next week ... so I'm hoping that means it's something else, despite the original doctor insisting it was cancer ...  ( on the basis of just an X-Ray ) Please, please take good care of yourself - and keep in touch to let me know how things are going for you xx

  • Hi Caroline sorry to read that you're going through all this it is absolute hell not knowing what you're facing and the feelings of pure panic,  I'm going through a similar thing but mines breast cancer for the 3rd time,  I've been bluntly told last Monday I can be treated but not cured, my oncologist appointment isn't until the 16th of Feb so I feel like I'm in limbo,  praying for a miracle for us all,  it helps to know you're not alone xx

  • I am so sorry to hear that you are having to face this for a third time .... i can't even comprehend what that must be like ! And to be told so bluntly is horrible ... and having to wait so long for your oncologist appointment must be unbearable .... especially given what they've told you ... sending you all of my prayers, wishes and hugs x

  • Thank you Caroline,  I'm happy to have found this forum , knowing you're not alone in your struggles really helps,  sending prayers and thoughts to you too xx 

  • Thank you Deborah - ditto xx

  • It's good that you've found us all, support from people who understand is so important.  take care xx

  • I'm 63 never been ill ,had no sign of anything being wrong .then in November started to get pain in my side which was very painful, ended up in hospital told pneumonia, had exrays and send home with antibiotics. Then out of the blue ct scans then hospital appointment to be told lung and possibly liver cancer carnt operate to advanced. Just waiting to see what can be done .I find it hard to leave the house ,it's my safe place .please held me get through this 

  • Hi , there are lots of different treatments now . When my step dad had LC 17 years ago he had chemo and radiotherapy now there is immunotherapy and targeted therapy . It was explained to me yesterday by a MacMillan nurse that they take our biopsies and test it for all different  types of treatments to see what is best for us .  I was tested for a mutation and have the Braf one , so I know that if I get reoccurrence they can use the targeted therapy for the mutation .  Hopefully you will get answers soon and a plan  whilst you are waiting it would be good for you to get some fresh air , even if it’s a little walk to the end of your street and back or try to meet a friend for a coffee .  It is easier said than done, and I’m going through those feelings now myself . I find myself driving to the shops have a Quick Look around and drive home again .  It breaks up the day . 

  • Hello Evertonfan - I’m so sorry to see that you feel so scared and I can completely relate to how it feels to be hit out of the blue with news like this… it’s paralysing.  This forum is a wonderful place to get help and support - Sweets1969 is a marvellous example of that! … we are all thinking of you and sending you lots of virtual hugs x