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. 

Parents
  • Hi Caroline , sorry to hear you are going through this .  I went through this last year .  Mine was an incidental finding on a ct scan . After the scan I saw a lung specialist , had to go for lung function test . Then I had to have a pet scan , back to the lung specialist .   Then the mdt met together . Then I had to see the lung surgeon  who agreed to surgery . After surgery (in the May) saw lung surgeon who gave me biopsy results stage 3 they found it in my lymph nodes . Off to oncology . Chemo started in August ( delayed due to other health conditions )  finished October clear scan November .   The worst bit was the hanging and waiting and it’s hard but you have to try and put it to the back of your mind  so you can function in hind sight I can see why.  they have to get the diagnosis right so they can put you on the correct treatment path if they find out it is cancer because some nodules aren’t .  when they do it they’ll  pick you up  and give the most wonderful care and fight this with you .  Please reach out if you would like to chat .

    i was a non smoker and had no symptoms .  They were scanning the pancreas after a gallbladder attack . 

  • 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

  • I think all of us on here know exactly what you're going through and how you're feeling,  I bought a book called Rapid Remission and its giving me some hope and positivity,  you're not alone,  sending prayers and thoughts xx

  • So sorry to read this ,yeah home is our safe place ,but it will honestly help if you try to get a small amount of fresh air honestly even a walk late at night ,I found myself out with my dog at all urs durning night and early hrs of morning , I've just had my pet scan on Thursday ,so another waiting game ,the waiting is terrible , we are all here and we will all support each other and get each other  through this , please stay positive sending love and prayers  x

Reply
  • So sorry to read this ,yeah home is our safe place ,but it will honestly help if you try to get a small amount of fresh air honestly even a walk late at night ,I found myself out with my dog at all urs durning night and early hrs of morning , I've just had my pet scan on Thursday ,so another waiting game ,the waiting is terrible , we are all here and we will all support each other and get each other  through this , please stay positive sending love and prayers  x

Children
  • Deborah ~ praying for as positive a result as possible for you (and everyone of course) Hopefully, you’re going to hear very soon.  So true about home being a safe space - I didn’t leave the house for 3 weeks - but of course you can end up just sitting with your own thoughts - what if’s - and usually worse case scenarios …. Hard as it is - even a little walk or a trip in a car can take you out of yourself - even for a little bit - thinking of you all x