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. 

  • 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

  • Hi Caroline my name is Deborah I'm 59 and same as you felt unwell on off for couple months went to doctor and was sent for x-ray 3weeks coming Monday had my x-ray and doc rung 1hr later to say I had nodgil. On lung so red flagged me for CT scan with I had on the Thursday so the doctor rung to come in and bring someone with me which I did the obvious was it was to tell me it was cancer and also n two lymph nodes turns out it's two lumps on right lung , going for my biopsy next Wednesday 7th and have to have a pep scan don't know when this will be , I know exactly what your going through th not knowing which cancer and stage is terrible , days I can barely function cry all day , then days I think we'll dam if this cancer is going to not get a dam good fight  ,my heart is breaking as yo s is huni but please we need to try stay positive we can fight this  sending you hugs  x

  • Oh my goodness Deborah 

    I am so sorry -I completely understand, I have hours at a time where I feel completely overwhelmed and just cry and cry.  And then I ‘pull myself together for a couple of hours and think - I’m strong, I’ll deal with whatever comes - one step at a time.. I’m so glad to hear that they seem to be dealing with your case really quickly - hopefully it’s early stages and they can get you sorted in double time .. I’m sending you lots of hugs .. stay strong and fingers and toes crossed for you for Wednesday 7th  …. Take care of yourself and try to distract yourself  - I’ve managed to get through 3 audiobooks in the last week - make sure you eat well too -don’t neglect yourself xx

  • Hi Caroline, I had a call from GP surgery in May 2022 to enquire if I was suitable and wanted to go for a CT scan under the National lung screening.  My Father died of lung cancer and as I had a cough since catching Covid in March 2022 I agreed to have a scan, this was done in June 2022. Several weeks later I received a call from my GP stating there was a shadow on my right lung but it wasn't cancer but they would keep  any eye on it every 6 months. I had another scan in December 2022 but they just said they'd call me again in 6 months. Went for another scan late July 2023, was called from hospital on 4th of August to attend lung clinic on 8th August. It was then explained to me the shadow had increased in size at the top of the right lobe, right lung. Also several small shadows had appeared at bottom of the same lobe. Next step was a PET scan done the following day which lit up suggesting cancer. Spirometry done and lungs/breathing well above average I then had to go for a biopsy at the end of August, was very anxious and have had really bad acid reflux ever since. They took a sample from the large shadow.. Results came back it was cancerous. I attended an appointment with my consultant for results and was told as there were multiple tumours surgery was not an option and I was being referred to Oncology for chemo to keep it at bay for as long as possible and was also being referred to MacMillan. We both left the appointment numb. Later the same day the lung nurse called and said they had given me wrong information and the team had discussed my case and wanted me to see a Thoracic surgeon in Leicester. I attended this appointment a week later and he was excellent explaining everything. He advised they would remove the large shadow/tumour which was confirmed cancerous and also the are containing the cluster of small shadows. There was also another mass to the right side of the lobe they would remove and analyse. He explained they would remove some lymph nodes too. Surgery was 23 September last year. Very painful,. Results at 6 week review confirmed larger shadow was a cancerous tumour. Mass removed at side of lobe was non cancerous scar tissue. The cluster of small shadows were confirmed as a different type of cancer which is unusual and rare type. Lymph nodes were clear which means both types of cancer originated in the lung so primary cancer not spread from anywhere else in the body and not spread anywhere else.  Would not give me a stage only that it was caught early. Was told there was a 30% chance it would come back MDT team plan is for review and scan every three months for the next five years. I had the first three month review on 18th January. Sadly no scan or xray had been booked so can't say if all clear and will have to wait for next review end of March. Classed as in remission for five years before they will say cured unless it comes back. Was booking a trip to the US to visit my sister, was shocked at the medical insurance I need as was in the thousands for one week. My aftercare at my GP practice has been poor as can never get appointments. Lots of other issues now such as breathlessness, acid reflux, fluid retention especially right leg, nerve pain, wear and tear arthiritic pain enhanced, unable to sleep and depression/anxiety. I hope all goes well for you and you have a better outcome/experience than I have had.

  • oh my goodness JulieJoy, this is an absolute horror story, i have no words.... I can't even imagine how you must feel .... this is truly terrible, I am so sorry.  

  • Hi Caroline I hope you are feeling a bit better today , hospital phone yesterday and pet scan is this Thursday some days I I want to know other days I think better not knowing also the biopsy is next Friday not Wednesday the girl give me the wrong date lol mistakes happen but at least got a letter to confirm , I usually try to do crafts but just can't get motivated , as slept very little last night also physio and dietitian nxt Tuesday , so all moving fast , I hope you are taking good care of yourself and sending big hugs God bless and stay positive x

  • Offline in reply to JulieJoy

    This is dreadful for you bless you and sending much love and hugs , please try stay positive and take as much rest as you need , I know the anxiety and depression is just awfull and not being able t sleep ,please remember we are all rooting you on and keeping you in my prayers x