Pre-diagnosis..

  • 7 replies
  • 43 subscribers
  • 476 views

Hi everyone, 

First post, due to that thing where you think of all the questions you have AFTER the doctor has called.. 

I’ve had various symptoms for over a year- urine frequency, retention, sweating, flushing, testicle ache. More recently I’ve had total exhaustion. I had prostate and psa checked and all fine. Then in November I had my first 360 health screening privately through work, and microscopic blood was found in my urine. I did four follow up tests over the course of six weeks and all were positive (taking me to Xmas). 

Two weeks ago I had a non-contrast ct, and they called within 48hrs to say they had found a cyst on my left kidney and it needed to be characterised. Six days later I had a contrast ct. I am awaiting these results. 

I haven’t yet received my urologist appointment. The referral letter in the nhs app says it’s over-due (it was 14 days requested).

my question- my gp didn’t mention anything about simple vs complex cysts… does the second ct dictate that the first shows that it’s complex? Or do all cysts have to go through contrast ct regardless of what they ‘look’ like on the first ct? 

Yours, stressed indiekid

  • Hello, not sure what CT with or without contrast show that's different but has your GP told you the size of the cyst? That can be an indicator of whether it is benign or otherwise. And have you also had all the blood tests?

  • Thanks, was just wondering if you only have the contast ct if the basic version was bad, or if it was standard. No mention of size. Had some general bloods as part of my health check in November, and no problems. Hopefully all will be fine- but at the moment I’m someone who has several symptoms and an investigative scan shows a mass, so…you can assume where my head is! 

  • Hi, yes, I've been where you are and the lack of certainty is very hard to deal with.I think the contrast just shows up other things to give a clearer overall picture. Try not to focus on it all too much. The mass is small so normally that means easier to treat so take heart from that at least.

  • Hi indiekid, I had contrast Ct from the off after mass picked on an ultrasound. Think the contrast makes things ‘glow’ more the more vascular they are. What that means with diagnosis I don’t know. 

    Hold you get some more info on what’s happening soon :) 

  • Still no 2nd CT result, but I’ve now been told the mass is perinephric, which I think is about the location… and it’s 4cm. I’ve been booked in for a flexible cystoscopy next week, which sounds like utter hell- no one can tell me what result has prompted that test either as it’s just appeared. Apparently the GP who has been dealing with me is away until march, and I hate my usual GP so….dunno. Urgh. 

  • Hi, this is where they look in your bladder  - have you been told there is blood in your urine? If so, that explains it but if not, ask why. It was suggested to me I might have one at my first clinic appointment after CT scan found my mass but I asked why as didn't want it unnecessarily and I didn't have it in the end.

  • Thanks for coming back to me. Yeah, got microscopic blood in my urine. Just thought that if they’re confident enough to book me in for an invasive test before the ct results even come back, it would be nice if they told me why…