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Probable lung cancer diagnosis - how/when are you told?

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I'm not quite sure which section this should be in, as it doesn't seem to fit anywhere, but I figured here might be a good place as we don't know about a diagnosis.

My mother has been coughing for about 18m and had AB's etc a few times.   A while back she started coughing up blood, and saw her GP.  She was referred for an urgent X-ray, which came back showing over a third of one of her lungs (R) shadowed.  A CT was done and she got a letter saying primary dx malignancy with a possibility of it being an infection.

A few weeks later she had a bronchial lavage and biospy done.  Just recently she has been into hospital for more tests.

This is all complicated by the fact that she won't tell us what is going on, just that she needs "tests".  She has said she hasn't got a diagnosis of anything yet, however she has dropped all plans and turned introspective (not like her).  She has always been someone who has struggled with truth, and who draws out the telling of bad news.  We want to support her, but have no idea how.  We saw the initial letter regarding the CT, but nothing since.

My feeling is that she would have got a definitive diagnosis after the biopsy at the very latest, and that any further tests could only really be to discover whether there are metastases and, if so, how extensive they are (especially given the size of the shadow, and the duration of her symptoms).  She is an ex-smoker, although she quit many years ago, she was a prolific smoker throughout her teens and early to mid 20's =/

I cannot but think that she knows, and that the news is not good.  My questions are:  When would you expect to recieve a diagnosis during all of this and how, and how best can we help her?  Also, I suppose, is there any hope that it *isn't* late stage terminal lung cancer?

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    I'm sorry to read this. Of course you want a definitive diagnosis with management or treatment plan.

    I would advise you to contact the secretary of the consultant she is under by phone. See if you can request an clinic/telephone appt to.disciss it.  They might be able to give you an idea of timescale for information.

     

    Good luck.

  • Offline in reply to Flower5757

    Unfortunately unless you are involved in what is happening to Mum she will hold all the cards and it becomes a guessing game.  My husband has stage 4 lung cancer and after his bronchial biopsy was telephoned two days later to confirm it was smoking related lung cancer, like Mum a heavy smoker until he packed in a few years earlier.  So she maybe telling you the truth, they aren't sure and need more tests.  No one would discuss my husband's health with me until I registered a letter with his consent to do so with his surgery and obviously I was with him when diagnosis was given and we had a McMillan nurse allocated who would also talk to me.  But there is no harm in trying to ask the questions you need answered but other than that you are going to have to ask Mum to keep you updated so you can be there for her.  Good luck, Carol 

  • Offline in reply to Dor06

    Thank you both x

    There is no way she will give us access, or even tell us who she is seeing. She has too much in her medical history that she'd be afraid we'd see (my father was honest with us though, which is how we know - but she doesn't know we know!)

    She had a second CT scan last week - I assume a PET, and a bone scan.  So from what I know about this sort of thing advanced lung cancer is pretty much the only real option and they're just checking how far it's gone anywhere else :(

    She is claiming that she doesn't know anything because "administrative errors".  I don't know if she is having trouble accepting it, or if she is just doing her usual.  I suspect the latter, which saddens me because this is just too important.  We only just lost our Dad at the beginning of the year, and whatever I think of my mother as a human, she's still my mother and a person, and deserving of all the help and support we can get/give her.

    Apologies if this is all sounding a bit soap-opera-esque.

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