Thorough - or lying by ommission?

OK, entirely unsurprisingly my tongue biopsy proved positive and on Thursday I was told "very small", TNM "zero" so far. "Best guess, surgery..." This, despite requested further tests (presumably re spreading), I found relatively encouraging. Yesterday a head/throat MRI - again, understandable and logical further check. I was also referred for a CT scan - booked for Monday. I suppose I should have asked "of where?" but I didn't. Have now received CT details through the post - "thorax, abdomen and pelvis". I can only assume that for reasons undisclosed to me there is something that strongly suggests that the sprerad is extensive and that tongue presumably a secondary not primary site. I really think I should have been told this on Thursday. 

I am not prepared to fight a losing battle on so many fronts! I need as much time as possible to put my affairs in order, buy my unwell wife a more suitable house and arrange my own death. I thought frankness and clarity supposed to be norm these days - clearly not. The man seems to have bottled out of imparting the harsh reality. How he could have thought that this in THIS patient's best interests beyond me. 

  • Hi dj48.

    It is very easy to assume that because test XYZ has been ordered, the doctor "thinks" I have cancer, or thinks it's worse than they've said.  It goes along with these others: The doctor/nurse said nothing or gave me a funny look, therefore he/she thinks I've got cancer. Or the radiographer was very quiet after the scan, he/she must have seen something bad on the screen. 

    Well, those of us who've been throught this mill a couple of times know better.  There are guidelines that doctors follow, and generally those guidelines include the ordering of certain tests as a matter of standard procedure. You quite rightly state that the MRI check is a "logical" step.  Well, a CT is much faster than an MRI and hence can check a larger volume of the body in a shorter time. It's not a question of the doctors "thinking" your cancer has spread, it's simply the doctors want to make sure that nothing has been missed.

    I doubt very much that they expect to find anything nasty with the CT, but they can't just assume that it's not there.

    So, I suggest you put your funeral plans on hold for now :)

  • Hi DJ,

    The short answer is "being thorough". It is all too easy to over-think things when you're stressed and worried. I had the opposite problem early on in my cancer journey. I was booked in for an upper body CT scan and successfully argued for this to be extended to the pelvic area as I wanted the assurance that a wider scan would give me. 

    Believe me, if there was known bad news they wouldn't hesitate in giving it to you. My own news was given to me very undiplomatically and research shows that when they get it wrong they almost always give a more negative prognosis than a more positive one.

    Good luck

    Dave

     

  • Thanks both. OK, so playing my rarely used optimism card I'll assume for now that simply "being thorough" before deciding what treatment may or may not be appropriate. That will of course mean MY decision is based on best possible evidence. If it all goes badly my Advance Directive is written and will be witnessed tomorrow.  

    Have to say that I think that to spend such time and therefore money on a person of my age and negative economic value is bizarre in a cash strapped NHS. 

  • Hi dj48,

    Nice to see the optimism card being played and that your advance directive is in place. None of us want to be left in a position where some eager beaver resuscitates us when we don't want that. Quality of life to me at least trumps quantity of life.

    I've no idea how old you are but I'm guessing either 48 or 70 based on your username. Ageism is as illegal as sexism or racism. Whether you're 18, 48, 70, 78 or 108 you have a right to be offered the best possible options. Obviously it is your call about whether the cost outweighs the benefit and no-one else's. Having been told I had only a 5% chance of survival even if I had a gruelling chemo regime (and being still here) my opinion is obviously biased but even if there's only a small hope it is surely better than no hope. That said, when I feel I'm at the end of the road I won't hesitate to call time on further treatment. 

    I'll not get into my political views of why the NHS is cash-strapped, BUT you have at least as much right to be treated appropriately as anyone else, especially when 1.1 million of A&E admissions last year were drink-related! 

    Cheers

    Dave ;-)

     

  • Couldn't agree with you more, Dave.  I paid my taxes all through my working life, so I will accept what the NHS offers me without feeling guilty. 

  • "....I'm guessing either 48 or 70 ...." The latter! I've had my promised 3 score and 10 - and that has involved a lot of pushing my luck. Big m'cycles never did much for longevity! And late '60s hippies ran lots of recreational risks. And the last 15 years 10s of '000s of miles road cycling....

    Thanks folks. We shall see....

     

  • Ah yes. I remember 1971 and leaving scorched tyre tracks on the road with my Honda 50 ;)

  • It's better to burn out than to fade away :-) 

    I missed the sixties (still at junior school till '69) but I can't remember much of the late seventies, so I must have enjoyed them lol Old enough to have enjoyed both Pink Floyd and The Ramones live for under a fiver each. 

     

     

  • Well.......cautious optimism continues. Although some analysis of MRI and CT results apparently incomplete, when I saw Consultant 2 days ago he was "quite optimistic" about "curative treatment". At this point he graded me T1, N0, M0. In particular no indication that spread to neck lymph nodes (the most common next step). Main problem that site difficult to access. He will try for examination under GA and IF finds only what MRI suggests then laser excision with no need for reconstruction. If findings contrary i.e. worse then will cease surgery and we will discuss further. He emphasised that he will tell me like it is - I said "good!" I have made it clear that I am not minded to accept open-ended treatment and lodged my Advance Directive on my Patient Records.

    All moved very quickly - surgery for 26 June. Wouldn't it be nice if they think I may be an easy win and good for their performance indicators!

     

  • Hi,

    That sounds pretty positive - anything with a zero in it sounds positive to me :-)

    Lol we all want to look good on Key Performance Indicators, especially if they measure what is valuable, rather than value what it measured.

    Meanwhile, I sticking rigidly to my cancer-busting wine diet ... wine is full of antioxidants! 

    Cheers

    Dave