What Next

Hello everyone

I don't post very often but regularly read your very informative posts.

Six months ago I asked you folks if I should ask my GP to refer me to a Respiratory Consultant for further investigation as my constant coughing, wheezing and breathlessness wasn't improving dispite regularly taking medication for COPD that she had diagnosed after my initial Spirometry test that had been carried out at a local clinic.

Finally today after three emergency hospital admissions and a battery of tests including a CT Scan, I have been told that all my results have come back as normal, I do not have COPD but I do have Asthma and that the scan had shown my lung tissue to be normal but I have two small nodules in one lung, that as a life long non smoker ( I will be 70 later this year) it is unlikely that they are cancerous but that lung cancer could not be ruled out.

He will discuss my case next week with his colleagues and I will probably be called back for another scan before seeing him again in three months. I have to stop taking Spiriva but to carry on with Fostair and Ventalin. I am now not only totally confused but also a little scared. Has anyone else been given information that seems to be contradictory as well as confusing. Does anyone else have have or know anything about these nodules, the consultant just said don't dwell on it until we have more information easier said than done!

29 Replies

oldestnewest
  • I am so sorry that you have had all this worry and uncertainty. I think not knowing about our lung conditions is just so difficult to live with, once we do know, even if it is not good news, we have something to get on with. And when we get repeated, bland reassurances that the results are clear, no abnormalities are detected when we know that there things wrong it just adds to our frustration. I am always curious about unusual, mysterious lung diseases. There is obviously no way I could begin to diagnose what is going on but please let us know how things develop.

    Kate

  • Thanks for taking time to answer my post. It's good to know that there is always support and understanding out there.

    As you rightly say it's the frustration of not having difinitive answers that make it so hard to remain positive. I will keep you posted. Thanks again Katinka46

  • I am sorry you are not getting answers. Diagnosis is often a process of elimination. Sadly this process takes time but your Doctor is looking for answers. Hopefully when your Doctor discusses your case with others it may lead to other avenues to investigate.

  • Thanks Badbessie, I am not the most patient of people, so find it hard to accept the lengthy process of elimination. It's so good to know there are people out there, you being one who understands our frustrations whilst at the same time showing adding the element of reality. Thanks again

  • In the UK with difficult cases consultants will often have a case review at a meeting of specialists.Sometimes this involves up to half a dozen Doctors in the same field. Hopefully this is what your doctor is doing. These reviews often lead to people getting answers.

  • I do hope so Badbessie, I really do.

  • I had a nodule and they were convinced I had cancer even though all the research I did told me that it was probably benign just from the size of it. Wish I could go back in time and follow my gut feeling. They removed part of my lung got a horrible staff infection and almost died still recovering and will never get back what I lost so be. Very careful. Turned out not to be cancer but damage is done

  • OMG Roessner541 how awful for you, you must feel very angry, to go through so much only to find it was to no avail. I take on board what your saying and will be ultra cautious. Thanks

  • I still get upset but what's done is done I have to concentrate on breathing now which is very poor thanks to the surgery

  • I think you are to be admired for being able to cope and try to move forward in such trying circumstances. I hope the the Medics treating you were called to task over their mistakes. Not much consolation in an apology for you, I know, as you can't get back what was taken away from you but some humility on their part should be shown.

  • I don't recall even getting an apology they were so sure of themselves I got a second opinion and they wanted to take more of my lung and then when they sent me home with an infectious that almost killed me that was the icing on the cake

  • It makes me so angry when I hear about Medics who put themselves on pedestals​. Thank God you didn't act on the second opinion. I can't understand why anyone can't apologies when they have made a mistake. I know no words would compensate for your loss and probably at the time a simple sorry would have had little meaning for you but it would have shown, when looking back on the happenings that they had acknowledged, they got it wrong and they are not the gods they sometimes think they are

    . Iam surprised you are not extremely bitter and untrusting of the medical profession. I do wish you well for the future, and that nobody throws anymore spanners in to the works

  • I'm thinking more control over my health it does make me bitter and angry at one point they wanted to put me on hospice which meant they would just drag me until I faded away I refuse so they put me on palitive care which gave me physical therapy I graduated from that for a long time I had panic attacks which were almost worse than the COPD I was in the hospital 8 times in less than six months. I try to find things from the health food store that will help me such as NAC, magnisium, coconut oil I was even babtized I have finally put my health in God's hands and my own determination. Ii worked two jobs until a few years ago and now feel like a prisoner in my own house so the anger is there I just can't let it rule me I can only speak up when I see someone might go through the same thing I did. They never did a boop before they did all this. I haven't been to the hospital in over a year. My GP took me off of my anxiety medicine so just went to my lung doctor and got a different kind. I am trying to get off of all my steroids as I know they can have long-term effects I'm not there yet but I'm getting there

  • You are one very brave person, I admire your resolve as well as your ability to carry on. Your faith Iam sure is a great comfort and they do say it moves mountains. So keep on keeping on

  • i wonder if the docs are afraid to admit their errors in case of law suits??

  • Hello Mooskie

    I am sure there is more than an element of truth in what you say with regard to lawsuit's. I am an ex employee of the NHS, but did not have a clinical​ role.

    I know many errors occur but it is very very rare that a Medic will be held responsible as an individual or directly offer an apology, the cost of monetary claims are born by the NHS Trust that employs the Medic, so ultimately the taxpayer stands the costs.

    Official apologies are sent by the hospitals Chief Executive. It is also very rare that a Medical professional is struck off BMW so even if dismissed from one Hospital they may employed by another Hospital.

    So in most instances the Medics are beyond reach or reproach. I think it is because they are so protected and rarely held individually​ responsible that leads to their sometimes cavalier behaviour. Sorry to have gone on for so long but sometimes I find it hard to step off my Soap Box!!

  • well keep on truckin! good luck.

  • thanks

  • Hi. Sorry you are having a worrying time. I had a nodule that disappeared of its own accord. I hope the same will be true for you.

  • Hello Rayswife. Thanks for the thought. It would be wonderful if they did disappear, I will I've in hope.

  • its a worry I was getting nowhere with the doctors in the uk same inhalers each time even after they told me I had lungs of a 107 year old @69 !!! I was in turkey for extended break and heard about a health check there ok it cost me a bit but all main things checked plus others .They came up with copd and straight away changed my medication there and then had a recheck one month later and my lung function went up by 3% so am pleased with that .Hope all goes well for you in the future

  • Thanks daveclark69 I actually live in Spain now and was about to apply for Residency when the Brexit vote hit which has put the process on hold, at least for a while. Hence my having to rely on the NHS which we all know is already over burdened and struggling to keep its head above the water.

    I am so glad you had a good experience and outcome in Turkey and I hope your life now is all the better for it, and you are getting the best you can out of life.

    I could say that my life at the moment is very much a case of "Bits and Pieces" if you follow my drift!!

  • I had a ct scan last October where they found several nodules. The Respiratory Physician consulted further and decided two were lymph nodes but the third needed watching, which is the recommended way of caring for them at first, unless there is other evidence where they might consider that they are cancerous, if you have smoked for instance. I had another scan in March when it was no different, and I am booked for another in September. If there are changes they will do something, if not they will continue watching. I was told that 50% of people have lung nodules, most of which are harmless. I hope this is true for you. It is a worrying time though, and I wish you all the best xx

  • Thanks Carnival567 your reply was just what I needed. Seems they may be taking the same tack with me. So glad all is well with you and long may it continue x

  • Hi Rosalada,

    My sister and I were with my Dad when one of his Specialists came in and said he wasn't sure if it was a stroke or a heart attack but he was pretty sure it was a stroke. A minute later the other Specialist came in and said the same but said that he was sure it was a heart attack! I would never have believed it but my sister and Dad also heard what I had heard! Ten months later the same symptoms were diagnosed as epilepsy. To this day we don't really know - My Dad died recently and even then there were different doctors telling us different things - I requested an autopsy and offered to pay but was denied - so I still don't know.

    All I can say is keep all your scans etc if you can and the results. Learn as much as you can and filter everything through what you, yourself, are experiencing. You will know what is working and what is not working. However it sounds like the doctors at the hospital are doing all the right things and giving you all the tests you and they need to come to a comprehensive diagnosis.

  • Hello Tugun,

    Thanks for responding to my post. Firstly I am sorry to hear you recently lost your Dad it will because very sad time for you.

    It must very difficult for you and your family to be denied the opportunity to establish the direct cause of his death.

    I will certainly take heed, it does sound from the replies that the Medics do have an established pathway to obtain correct diagnosis. However it is always best to collect evidence should a need ever arise to stand my corner. Thanks again

  • Disease diagnosis is always a percentage play, symptom A usually means problem B. But every body is different and there is always room for doubt. A case conference increases the experience brought to bear and may introduce other possible causes to be considered but it all comes down to opinion, even when interpreting hard evidence such as a CT scan. Agree that you should keep a record of all that happens; recommend a diary, log everything that may be relevant, meds, peak flows, consultations, how you feel physically and mentally. Also make a note of any questions you want answered so that you can refer to them when you get asked. Aside from anything else this will allow you to monitor your own progress and provide more info for medics.

    Here's hoping for your nodules to turn out okay and the asthma to stabilise.

  • Thanks Ipogle for the advice, it is always helpful when your head is all over the place to get the opinion of clear headed​ object others. To day I feel more object myself, realise the importance of keeping an audit trail, as you rightly say it serves two purposes both of which are important aspects when dealing with Chronic conditions.

    I to hope the nodules remain of no consequence but if that is not to be the case I will concern myself about them when I have to and not before.

  • Thanks Rosalada,

    Wishing you all the best and hope everything works out well for you.

You may also like...