early detection

i had a xray 2013 which showed a scar on my right lung the consultant made light of it saying he didnt know why the doctor sent me with that he said as long as i didnt smoke it wouldnt get any worse and it wouldnt get any better i was 66 at the time and still working he then said i was probably fitter than him in fact he said i was fitter than him.now two years later i have terminal unoperable lung cancer on the same lung i keep thinking if only they had kept a check on me they would have got it sooner.

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  • hello Ranger

    Welcome to the forum but very sorry to hear your post. Being told you have inoperable lung cancer must have come as an incredible shock. It would be understandable if you felt quite angry and confused between what you heard two years ago and what you have been told now.

    I hope you have had good support and your medical team and they are looking after you properly?

    The story you told above is extremely distressing. One of the difficult things about diagnosing lung cancer is identifying when a change in the lung is a tumour and when it is benign and not a cause for concern.

    Only you can decide how useful it is to question the "what if" looking back at your x-ray results in 2013. Wanting answers and explanations is understandable and you do have the right to ask these questions of the hospital. What you have to decide for yourself is: will that help you deal with the situation you find yourself in and will it offer any benefit if you can get an answer as to whether what was visible on your 2013 is related to your current lung cancer?

    Please do let us know if we can help in anyway. There are many members of the forum who find themselves in a similar situation to yourself. You may have all the information you need, but if not do feel free to call us on our free helpline (0333 323 7200 option 2). I am sure many of the forum members will be willing to share their experience and offer their support to you.

    If you want to share more of what you are going through just now, or if we can help in anyway do let us know.

    sending you best wishes

    Lorraine on behalf of the Information & Support team @Roy Castle

  • thank you lorraine its just nobody thinks its their fault when something like this happens i know it didnt help that i smoked in the past its just sometimes i feel a bit low.

  • So sorry to hear your news. It must be a dreadful shock and I hope you get some treatment too.

    I get very annoyed when I hear any consultant saying it is cancer or its not cancer without taking any cells to look at. I was told from my first appointment after my x ray that "Until we have cells under a microscope, we won't know either way".

    I hope you can come to terms with it. I would certainly inform PALS if only to try and stop it happening to someone else.

    Very best wishes

    Julie x

  • Ranger

    Your feelings are completely understandable. Don't beat yourself up about past smoking, always easy to know what you ought to have done/ not done in hindsight.

    As Julie says might be worth raising this with PALS (Patient Advice and Liaison Team). Someone should be acknowledging that at least they may have been able to follow up on your 1st x-ray.

    best wishes

    Lorraine

  • thank you julie and lorraine it always helps to get things off your chest and have someone who also knows how it feels not that i would wish this disease on anyone else,x

  • A similiar thing happened to me. I was 48 years old and a non smoker. I had a persistent cough and the consultant said that I had right middle lobe collapse which was common for someone of my age. He also said that the cough related to a virus that I had had and that it could last up to 12 months. This was in January 2013. In November 2013 I started to loose my eye sight in my right eye. A secondary tumour was found there with the primary one in my lung, I was then diagnosed as terminal.

    I did make a complaint to the hospital and met three of the Consultants. One of whom apologised. I found the meeting quite stressful but was glad that I had fedback to them. I knew that this would not affect my prognosis but hoped that it would help others.

    Thinking of you at this difficult time x

  • thank you bow19 im trying to pluck up the courage to make a complaint against the consultant who made the remarks after my first xray,i know it will not change the outcome for me now but maybe stop him taking things to lightly in the future.

  • We had a similar frustrating time as my husband was ridiculously fit and positive and young when he was diagnosed with inoperable lung cancer. It is really hard to know whether the outcome could have been different if his cancer had been picked up in A&E in April 2014 (when he asked A&E drs directly 'do I have lung cancer?') rather than July 2014. He had night sweats for a couple of years prior but I have no idea if it was linked to the cancer. The drs didnt really know how long he'd had it or how fast it could grow. It's really hard to look back with hindsight. There are so many things I would have done or checked or campaigned for...but we had no experience of being in a hospital system and we bumbled about as best we could.

    This forum is great. People here give great suggestions and advice and they know what you're going through...I found it very supportive.

    Also, if there's any way of your type of cancer being part of a trial, then I've heard that can be a good option, or one of the pill therapies...it's all a bit of a dice roll but try to stack the odds in your favour as much as possible. Barts in London seem to so a lot of trials.

    Anyway, I am sending you lots of positive energy to deal with the present and enjoy the sunshine if it's shining where you are.

    Best to everyone

    Kx

  • thank you pea green boat i know exactly what you mean about frustrating time,i have asked consultant about any trials suitable for me he said wait till ive finished chemo and see what the ct scan shows. hope everything is as good as can be for youse at the moment sending some positive vibes x

  • Ranger47, I don't know why he is not looking at trial before Chemo. I would ask again about trials because some of them will not let you join if you have started Chemo because that would effect the trial. Here is a link to the NHS Choices Lung cancer trials for UK.

    nhs.uk/Conditions/Cancer-of...

    See if there are some recruiting for your type and read the criteria necessary to be accepted.

    Des.

  • When my wife was diagnosed in 2013 there was not many trials available it looks like there has been a concerted effort now to get hold of this desease

  • thanks des i will bring your point up with consultant thaks for the info

  • On April 16, 2015 my husband had some chest pains and didn't feel well. I called for an ambulance and they took him to the hospital. It was 11:00 p.m.- they did a series of xrays and extensive blood work. At 4:00 a.m. I picked him up. They said that nothing was really wrong. A couple of days later on the 19th he called me from work and said he really didn't feel well so I suggested he leave and go back to the hospital. Again, the hospital did all kinds of xrays and blood work. Sent him home. Following this he went in to see our family physician who ordered a routine chest xray. Long story short, he called Bob in and told him that a spot was detected on his left lower lung and he wanted him to have a biopsy. This was May-bottom line-it was determined that he had lung cancer and after an oncologist had a pet scan done it was determined he had Stage 4 lung cancer, inoperable -spread to other lung, liver, vertebrae-with a bad prognosis and beginning of chemotherapy. Yes, we love the idea of early detection-what do you do when a big hospital tells you nothing is wrong? Barbara

  • dear barbara sorry to hear about your husband i know from personal experience what your going through its as if they just pass the buck when question their mistakes its never their fault,if only they would listen to the person who is doing the suffering and less of the i know better attitude.all the best tomx

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