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 . 

  • Hi sweets1969

    thank you so much for reaching out and telling me your story - it really does help … I am praying that like you whatever it is will be operable.  I know that you are absolutely right about putting it to the back of your mind and getting on with things … and I am getting a bit better.  I’m hoping that I should hear back with an appt soon - had the ct scan on Monday.  I think I expected it to be a bit quicker as the doctor told me I was on a 28 day urgent pathway… already on day 21.  I know that once I know what I’m dealing with I’ll be able to cope much better … pull on my big girl pants and get on with it.   What is happening with you now? Are you considered clear/ in remission? What happens next for you? 

    thank you so much and all my best wishes to you x

  • I found Ild get appointments with only a couple of days notice .  Do you have a lung nurse specialist ? Can you call them and ask if they know when you’ll get your results ?  I did that a couple of times .  I found the not knowing what’s going on and not being able to plan unbearable .  

    They did say to me that a mass could be infection . 
     I am classed as being in remission I think . They didn’t say . Last appointment they said no evidence detected . So next appointment should be in May with a scan .  Fingers crossed no reoccurrence.  I have found it hard adjusting after treatment . Life was hectic and now nothing , a very weird feeling . 

    i hope You get good news.   Will be thinking of you . 

  • It’s very good news to hear you’re clear at the mo…. Hopefully that’s it for you.  I do know that does happen to many people … my eldest sister included who had metastasised breast cancer 40 years ago and is still going strong in her late 70’s 

    thank you for the advice - I haven’t been assigned anyone- but the CT scan was booked was booked by the lung clinic - so I’m going to give them a ring 

    BTW - I was a light smoker until I got pregnant age 27 - 40 years ago - nothing since 

    take care x

Reply
  • It’s very good news to hear you’re clear at the mo…. Hopefully that’s it for you.  I do know that does happen to many people … my eldest sister included who had metastasised breast cancer 40 years ago and is still going strong in her late 70’s 

    thank you for the advice - I haven’t been assigned anyone- but the CT scan was booked was booked by the lung clinic - so I’m going to give them a ring 

    BTW - I was a light smoker until I got pregnant age 27 - 40 years ago - nothing since 

    take care x

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