Results of MRI

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My partner and I saw our GP this afternoon; he told us that the MRI showed spread to the bones (which we already knew in general terms from what the doctor doing his biopsy said last week). The GP was very reassuring, suggested only a few lesions in his spine. He asked if my partner wanted to see the report; he didn't, but I said I'd like a copy. So, my situation now is that I read the report, and the GP was not being entirely truthful (though he had only just read it himself and had to think on the hoof) - there is quite extensive spread in his spine and pelvis. So now I know that, but my partner doesn't, and is feeling relieved at how the appointment went. I don't want to tell him, but it hurts to see him over-optimistic....and although he's bound to find out at the follow-up appointment at the hospital next week, will he be angry with me for not telling him? Angry with the GP for not telling him? I'm angry with the GP - but he was probably trying not to worry my partner more than he had to (or too cowardly to tell him?). I wish I hadn't read the damn thing either! One good thing is that at least my partner will feel relatively cheerful between now and the follow-up - but how disappointed will he be when we get there?! I've pretty much decided not to tell him...I just hope I can cope with keeping it to myself for a week.

  • Sorry to read about your husband’s diagnosis. The GP should have told him the full story.

    The treatment path is likely to be the same but personally I prefer to know the full story.

    I would think they will start him on Bicalutamide tablets for a few weeks with an injection to start hormone therapy. This is likely to be followed up by chemotherapy provided he is in good enough health to deal with it.

    Evidence from the Stampede trial showed this helped the hormone therapy work for longer.

    More information about advanced prostate cancer here 

    https://prostatecanceruk.org/prostate-information/just-diagnosed/advanced-prostate-cancer

    Would he read the report if you left it lying around?

    I assume he is seeing an oncologist next week?

    Ido4

  • Just a thought, the report saying extensive spread could be mean over a extensive area, rather than the amount of spread.

    best regards 

    Don't let your good days be spoilt by the worry of a bad day, that may or may not come along.

  • He's been on bicalutamide since late December, and had his first Zoladex implant yesterday. We're told the appointment on 13th Feb is with the Specialist Nurse - results of biopsy and so on. Whether we learn about the overall treatment plan then, or whether there will be another appointment with an oncologist to follow we don't know at present.

    I've looked at the prostate.cancer.uk site already, but will have another look.

    I don't know if he would read the report - I suspect not....I'm taking the line of not mentioning it, and maybe saying I'd decided I'd rather not read it after all, and wait for the appointment, if he asks. The moot point is whether he'd be more or less upset if I told him or he hears it at the hospital - I dunno.

    How much trust he'll have in the GP after this is anyone's guess....but there are others in the practice we can see.

    Partner of man with advanced prostate cancer.
  • The thing is the person with all the knowledge and insight about this disease is generally not your GP it's the consultant oncologist, urologist and also the specialist prostate cancer nurses that you will come into contact with.  Quite often by the end of treatment we probably know as much if not more than the GP about our particular disease.  Also medical speak means different things to medical professionals than it does to us.  I was listening to a programme about this the other night - take for instance the word "chronic" to you and I it probably sounds awful as if we have a dreadful quality of life and are bed bound or housebound.  In medical terms it actually means any condition that has persisted for more than 3 months.  So anyone with asthma, for instance, has a chronic condition but generally with treatment they have a great quality of life and will live to a ripe old age but they will still have a chronic condition all their lives.  This programme was suggesting that all letters are written so that "ordinary people" can understand them and they should be written to the patient and copied to the Doc not the other way around as it is done at the moment.  Don't you love the letters that start "I saw the young looking Mr ...  ... today"   and so on and so forth?  Ugh.  I do hope this comes about as it seems such a better and more civilised way to do business.  Apparently they already have people coming into various offices to go through language so that it is less ambiguous and it really was amazing at what words were changed.  I think it was "Word of Mouth" on Radio 4.  I mean to re-listen to it as it was late and I was dozing my way through it.   Always difficult to get at the laymans' meaning of what is written in a medical report.  It really is better to wait until you are speaking with a specialist such as the nurse or oncologist and read through it together.  As for whether or not to tell your husband well I think you are better to say nothing until talking all this through with the specialist nurse as she should explain it all to you in ways you can understand - if you don't understand then do ask - you may think that you appear stupid but why should be able to understand all the medical terms and different meanings they have as opposed to "everyday english language"  If I were as worried as you I would wait until hubby was out and contact the specialist prostate cancer nurses on the Prostate Cancer UK helpline and talk through it with them.  The call is free and they are available every weekday between 9am to 6pm and on Wednesdays 9am to 8pm the number is 0800 074 8383.  They were invaluable to my wife and I and I called them about half a dozen times when I was unable to contact my keyworker - Infact in 3 years I have only been able to contact her once by e mail.  I don't think (or I would like not to think) tha tyour GP was deliberately misleading you but rather he was trying to impart as much information in a short time - 10 min appointment time without giving you much to worry about until you were able to see a specialist and discuss the tests with them.  I really do think that is so.

    All the best,

    Des

  • I agree about the wording of letters - my old Dad had one describing him as a "delightful gentleman", and another that had assumed I was his wife!

    Probably that was the case with the GP, tho he does strike me as the sort of doctor who only tells the patient the good news. Which may be fine with my partner anyway - he's not spent time online with this, he's content to let the doctors tell him things.

    Whatever, I've decided to say nothing and wait for the appointment.

    Partner of man with advanced prostate cancer.
  • Hmm.  Atleast it didn't say "delightful old gentleman" eh?  My wife is often thought to be my daughter - yes there is a large age gap and she is also my carer but I look so good and can do so much most of the time no one thinks I have a carer but due to what they so wonderfully call my co-morbidities - really pre- existing conditions I often cannot walk very far or even get up from the bed or chair for a few days.  On the other days I can go to the gym and was lucky enough to have a long good spell when undergoing my cancer treatment so that I could continue to go tot he gym and keep fit.  6 months later I couldn't do a thing for months!  Anyway I digress, we were just talking about this again and isn't the English Language delightfully ambiguous?  So you could have been told "a few ribs" were involved.  You would think one would be specified as would two as in saying a couple - though maybe not as people often say a couple when it is more than 2.  So, saying "a few" could be as few as 3 or as many as - well the world is your oyster there.  It's like the way we say "quite good" when in fact we mean really good or even very good - to my American and South African family quite good means not that good at all - and really, I suppose they are correct. 

    I really don't think you should worry about the report as you should say you were waiting to talk it through with a specialist as didn't understand the report - which is, after all, what you are doing.

    Allt he very best to you and your hubby.

    Des

  • Yes, I've been described as a delightful man, a nice man and the last letter as this poor man! The latter because he knows I worry about everything, even when there is nothing to worry about. That's when the 'what if' anxiety takes over. One letter had previous medical information about a completely different person, including a heart bypass which I knew wasn't me! They corrected it quickly and somebody probably was told to be more careful. 

    Waiting nervously for my next PSA test on 10 March. They are going down, but only from 3.1 to 2.9 last time which was a three month gap, so I'm waiting 6 months this time. Rt finished 1 year and 5 days ago, so early(ish) days yet.

    About not telling the partner about the report, I agree that a ph call to a consultant etc when the husband is out might be a good idea. 

    Best wishes to all!

    John. 

  • I am in two minds as to how much a I want to know. I know it’s in my ribs but if I know where and how many whether instead of shaking off aches and pains I’d dwell too much in them. The flip side is if I know and the pain increases I know to raise it sooner