Lung Cancer tests - awaiting Diagnosis

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Hi Everyone

I am new here and hope to connect with others going through similar experiences and share mine if it helps other too. 

I am currently going through the 2 week pathway of tests for lung cancer. To say the timing of this is not good is an understatement as I have been supporting my recently bereaved daughter and 4 year old granddaughter after my son in law decided to end his life under a train! He had been suffering with mental health issues for quite a while. The day after he died (April 7th) i got my first huge pain in my chest. I put it down to stress but it was sooo sore. As it transpires, the pain was when my lung must have collapsed due a blockage. I tried to hide it but my daughter noticed and insisted I got checked out, which I said I would. A few days later it happened again but less severe so I went onto my GP's App and booked a telephone appointment. I was staying with my daughter 50 miles from home so I booked the chest xray a week later. Then the ball started rolling very fast! The next day I was called to attend a CT scan and then a hospital appointment to book in for more tests. During this period i am having to keep it from my 3 adult children and wider family. Only my partner knows and a work colleague who i trust. Between organising and attending a funeral, various discussions with coroners and the like i have already been through every emotion i can think of. 

Yesterday i had a Bronchoscopy (not nice!) today a Spirometer test and a PET scan imminently (when they eventually get their act together and give me an appointment). These will then form the basis for my MDT meeting to eventually form my diagnosis. 

So far all the NHS staff have been wonderful and so supportive but its still lonely and isolating being in the limbo of pre-diagnosis. 

  • Hello Sal60,  I’m so sorry to read your post, you are really going through a tough and challenging time!  I am a new by on here too, last thursday I was informed by my GP that a recent chest x ray showed a nodule on my right upper lung which they suspect is lung cancer as I was a smoker. I went for my CT scan yesterday and now have to play the waiting game - up to 7 days - until my GP receives the results/report from the consultants...I have only shared with my husband and a few work colleagues as I want to have a full diagnosis and prognosis to be able to answer all the questions I know will come once I share with my 3 adult children and 3 siblings.  I know exactly what you mean bing in the limbo of pre-diagnosis it is so scary and life changing.  I wish you well on your journey and hope we can support each other through the coming weeks? Take care x 

  • Hi Helene1962. Sounds like we are having similar journeys at the moment. I too have 3 adult children although i have 4 siblings. I too smoked for many years but gave up 17 years ago. Just had confirmation of my PET scan appointment. I need to wait a week because i just had the bronchoscopy! I wish they had talked to each other so these tests can be better coordinated. Worth noting that if you have to have the same. You may find your results come back sooner and it may be the hospital that calls you before your GP. Mine did although i had to fit my hospital consultation in later as they offered me the day of the funeral! The GP called too to go through the detail as the hospital only booked me in and wouldn't reveal anything over the phone. I have found the NHS lung cancer page helpful in understanding possible steps, might be worth a look. https://www.nhs.uk/conditions/lung-cancer/ Scary but I found it better to be informed before my hospital appointment meaning it was a little easier to take in. Make sure you take someone with you to your appointment too. Buy loads of tissues, nice soft ones and keep a few treats nearby, they help a little. Good luck with your next steps, i am sure we can support each other through this. x

  • Sorry that you all find yourself members of a club nobody wants to be in. Although smoking is obviously one cause of lung cancer it is not always the case. I had given up over 30 years when I was diagnosed with a cancer generally linked to non or very light smokers. Treatments are improving all the time, and survival rates are increasing (I was diagnosed as incurable over two years ago). It is a really difficult, and emotional, time when waiting for a full diagnosis and treatment plan and I hope you all have support. Once you know the score it gives you a target and, hopefully, something to fight. There are many people on this website who will be able to offer support and advice once you know your treatment plan - and no-one here judges. One thing I would advise is do NOT Google for information as there is a lot of old and misinformed info on-line. With sites such as this you get professional, up to date advice

    John

    Per Ardua Ad Astra
  • Hello and Thank You John Boy, nice to hear positive but realistic comments x we are all on a different journey with that central connection and I am so glad and grateful that I found this group x Good luck going forward x

  • Hi John Boy2 Thank you for your positive and inspiring reply. I agree that 'Googling' can be dangerous and upsetting. I have found the NHS site helpful though as it is factual and up to date and hope any information on the MacMillan site  too will be useful and supportive. Good luck with your journey and treatment. I personally now have just my PET scan next week until diagnosis so have decided that until then I am chilling and doing as I please, no work unless i want to as I am self-employed. Told my family I have to self-isolate for up to 2 weeks (due to some tests). They have no idea so that made it easier to be taken out of the loop for the bereavement support for my daughter who still needs people with her (drafted in her siblings) although she is beginning to get her life back gradually. I am so not looking forward to dropping her my diagnosis bombshell on top of everything else. For the next week I will try to pretend things are normal! 

  • Hi Sal60 and welcome to the group, but sorry you find yourself here. Firstly my deepest condolences for the loss of your son in law. That must of been completely devastating for the family. I can understand how you are trying to protect your daughter, 

    These first few weeks of tests and waiting for results are definitely the worst part. I agree with John Boy2 try not to google, as the information is certainly out of date.  

    There are lots of people in the group who have been around for some time. All of our stories are different, and you can read some of our journeys by clicking on our profile name or picture, and going to our profile.  If you have a moment it will be very helpful if you can put some details about yourself on Your profile This is very helpful for others to see your journey, and see if they are on the same treatment plan. You just click on your username then select profile. You can edit this information at anytime, and update the journey as you go.  

    All the best for the PET scan next week.

    Chelle 

    Try to be a rainbow,in somebody else's cloud
    Maya Angelou

    Community Champion badge
  • Thank you chellesimo. It's lovely to have a outlet for my thoughts during this difficult time. I have added a few lines on my profile too, thanks for telling me about that. 

  • So, diagnosis day - 18th May.... unexpectedly! Had my PET scan last Wednesday so was told by 'admin' my results would miss the MDT meeting so my case would be delayed until the week after (this week, 20th May) Therefore i would get a call after the meeting to book me in for the following Tuesday (25th May). Apparently not! Meeting was last week and i had an appointment this morning at the hospital that nobody told me about! Got a call from the nurse and we decided to have the results over the phone. NSCLC was diagnosed but they need a further biopsy sample to send away for 'SOS molecular testing' as there is some unknowns with the cells. At least they have samples available from the bronchoscopy to avoid me having to undergo more procedures for now. Max 2 week wait for the results to come back. Plan at present is radiotherapy initially as surgery is not an option as the cancer is in the lymph nodes. Oncology appointment will be around 2 weeks away where they will show me more including the PET scans etc.

    I was told also of fluid in my lung, possibly secondary. That threw my mind right back to 1976 when my mother was diagnosed with secondary lung cancer. I found out from my brother today she had cancer in the pancreas which i never knew before. One worry i have now is if the cancer has travelled to the lung from elsewhere or the other way round. Time will tell i suppose once the molecular tests come back. 

    Started telling my family today, siblings first with a Zoom meeting booked for tonight to tell my adult children... not looking forward to that one! 

    So....still some uncertainty but the bittersweet pill of finding out a week earlier than expected. Next.....!

  • Hi Sal60, I’m so sorry to hear your latest update - I wish you well with your on going journey and hope that your treatment is successful. Telling family especially your siblings and children is the hardest part…..take care of you… do you have good support? X

  • After spending so long keeping my initial news I feel like Ive not been on here properly to up date and inform you all of my journey. Following the news from my GP that my x ray showed up a nodule which they were treating as suspected lung cancer I had a CT scan on 5th May…5 days later we are sat in the hospital receiving the news that it definitely is not lung cancer but a recovering area in my lung following several lung infections in the previous 12 months…I don’t remember much of the appointment - both myself and my husband had just spent 12 days going through every possible scenario and of course the worst case scenario won every time…needless to say we both broke down and even though the news was the best we could have hoped for we are still in a state of shock.  I am currently awaiting spirometry to diagnose what is exactly wrong with my lungs ie emphysema, COPD, acute asthma so even though it is not the dreaded news we expected we are still on a journey.   I would like to thank all of you who responded to my initial posts and would like to remain on here to support and share things going forward.  Take care all of you and Sal if you want to private message me I would love to keep in touch? Regards Helene1962