No Info :(

Hi all,

Is this usual?  I went to Dr with persistent long term painful throat, enlarged node, ear ache,  enlarged tonsil,  difficult swallowing etc.  He examined me, asked some questions and proceeded to send me for an urgent ENT appointment.   The Dr gave no indication as to what he thought may be the problem.  

I saw ENT, he used a camera to look at my throat via my nose and mouth. Asked a few questions and then booked me for an urgent ct scan (which I am having today) and biopsy if necessary.  Again I was left with no indication of what he thought may be the problem. 

I  am here because my mind is spinning on overdrive through lack of info from Dr & ENT.  To be honest I am hoping that I am on totally the wrong forum. 

My question is is it usual for them not to mention what they are suspecting.   Were you told that cancer was suspected or that they wanted to rule it out? Were you left in the dark like me?  Will radiology give me any more info?

Sorry for all the questions.   Thank you for reading.

  • Hi DragonFach. Welcome to the forum.

    It's a little unusual for the GP and the specialist to say nothing. It was probably a break down of communication rather than any deliberate attempt to deceive.  We're well past the time when doctors hid bad news from patients.  Of course, you are allowed to ask at the time (although it's fair to say many of us are scared to do so), although there's no point asking the scanner technicians - they're not qualified to pass judgement on the images they see, and even they spot something suspicious, they probably won't be able to tell if it's trivial or serious.

    Reading others' stories, and from my own personal experience of  ENT, it seems very common to be put through a standard battery of tests: camera up the nose and down the throat, CT and/or MRI, ultrasound, biopsy and panendscopy.  Everybody seems to get some or all of these tests, but only about 10% of people referred turn out to have cancer once all the tests are complete.  That's nine out of ten put through all this stress, but no cancer found.  That's what happened to me: camera up the nose, MRI, then panendoscopy and biopsy under general anaesthetic, but nothing found. So we can infer that simply being referred for a test shouldn't be any cause for alarm - although we're only human and the waiting for results is a pain.

     

  • Hi Telemando 

    Thank you so much for taking time to reply.   I never asked the Dr or ENT any questions because I  didn't think to at the time.  I  have a rare brain disorder, much like MS, and my wife would normally attend appointments with me to ask and retain questions and answers. 

    Of course with covid she was unable to attend with me.  

    You have reassured me with your reply and the 9 out of 10 negative,  I thank you for that.  I don't mind either way (you can't fight a battle if you don't know the enemy) it's the lack of information that I find hard to deal with. 

    Thank you so much again for your reply  

  • You're welcome.  I'm glad I could help.  Please let us know how you get on - your feedback helps us improve our answers in the future.

  • Well I've had a CT of brain, neck and chest.  Radiology said that ENT should be in contact with in the next 10 days, sooner if its urgent.   When I saw ENT a few days ago he said he was sending me for a ct and maybe a biopsy.  I  am thinking that as I  wasn't sent for biopsy from ct it can only be a good sign  

  • Morning, 

    They do tend to be very good with things like this, and they are prioritising the 'nasties' as I call them.  So, hopefully it is a good sign for you.

    How are you feeling?

  • Morning,

    Hats off to the NHS they have been super fast with everything and that's with the added problems that covid is causing them.

    I have been through similar before a few years ago.  I was eventually diagnosed with a rare brain condition which presents much like MS and Parkinsons, so I should be an expert at not thinking the worst.  But can't help but worry,  its so uncomfortable and painful I just want any diagnosis so I can get on top of it.  

  • What was the brain condition, if you don't mind me asking? 

     

    My mother had an MRI today and needs to call Monsay for the results.... they suspect MS.  But she is not wanting the results before Christmas  so this is going to be a funny Christmas.  

     

    I'm not telling my parents or siblings about my blood test for CA125 though x

  • I had MRI a few years ago for MS.  Turned out to be a rare called Functional Neurological Disorder and Functional Movement Disorder (FND & FMD).  It is very misunderstood by the medical profession as they used to think it was a psychological condition caused by trauma.  Sadly many have not updated their knowledge.   

    My neurologist thinks that I was probably born with it.  Like MS it affects the nervous system, main difference being with MS there is physical damage to the nerves.  Although like MS I do have scaring on the brain.  I'm not sure if all FND sufferers have the scaring.

    Interestingly one of my FND symptoms is the sensation of burnt skin on my arms, feels like 3rd degree burns.  It's caused by the brain not understanding the messages from my nerves.

    I understand your Mum not wanting results until after Christmas,  I wish her well. 

    Its only my wife, mum and brother who know about my suspect throat.  Not told any of my children.

  • Hi,

    How did your Mother get on with her results?

  • Hey hun,

     

    Thank you for checking in.  Hope you are ok?

     

    She hasn't called.  She wants to just enjoy Christmas xxx