Hello peeps

[janewolfe]

Can people explain this to me in english or as you would explain to a 10 year old lol? Obviously i know it's very bad news. Does this mean my bladder cancer has spread to my kidneys? or vice versa.   

   "73 year old female visible haematuria. Renal ultrasound = left kidney shows complex cyst with irregular areas in the bladder. Bloods gfr 80.  FINDINGS 4cm long axis papillary lesion on wall of bladder. Both UOs are visible away from the lesions. Base of lesion 2cm and likely to be TCC lesion”

with thanks

[RJG]

Hi @janewolfe ,

Obviously written by clinicians; to be read by clinicians.

This is your life that they are talking about and you have every right to fully understand what they are writing and what it means for your treatment options and likely outcome.

However, I believe that it would be somewhat irresponsible any one of us to attempt to translate this.

You need to talk it through with your specialist or at least with your GP. They have access to the original scans and test results that led to this summary. Take someone with you as your advocate - to make sure that the doctors don't continue to baffle you with their technical terms and jargon. Don't leave until you get them to confirm that you can correctly explain back to them (in your own words) what it all means.

Good luck and big hugs,

Rick

[JohnDenning59]

Hello Jane, my name is Colin. I had a similar experience after my scan a few months ago and found myself looking at a data report that I didn't understand. What I did is to google the terms individually, for example T4N0 in my case meant a 4cm tumour that had reached some lymph nodes but had not yet metastasised.
I don't want to translate what you have written, but as I said, just break down the terms like haematuria, gfr 80 , papillary lesion, and TCC lesion so that you can discuss your findings with your oncologist.
One thing I did find with myself is that even my oncologist didn't seem to want to go into details, so I just asked him straight to do so, and he did.
It wasn't the news I was hoping for, but now at least I know the truth, which, strangely, feels okay.
Good luck with your journey. You've got this.
Colin

[Lampwork54]

Hi, 

I can't add more than what the other two posts have said to you.  It's good advice.  Do look up some of the terms to know what it is you need to know.  My surgeon told me not to google the disease but I did.  I felt more. in control once I did and even found some hope from doing so.  Ask your doctor or surgeon to explain to you exactly what you have and what that means.  Don't be embarrassed to ask questions.  You don't have a medical degree therefore they are used to explaining the terminology to patients.  

I wish you great support and the best team to advise you on your journey.