Diagnosed 11 th Feb

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Good Evening all 

I started having blood in my Urine Last year went to the doctors on four ocassions every time it happened I went you’ve got a UTI you’ve got urethritis and so on bloods done urine cytology done all came back normal and even doctors comments back that up with comment on the NHS app 

finally 29th of January seen a doctor that just went 2ww referral straightaway gone on long enough went for a Cystocopy 11th of Feb and things went from 0-100 that day have you brought someone with you why ? You’ve found something haven’t you Yes was the reply get yourself sorted and we will discuss this in the assessment room in 5 minutes grab your wife.

We went in where he proceeded to tell me he had found a 2cm Papillary tumour Non invasive from what he could see and said it does like we’ve found this early ( not as early as I’d of liked them to find it and not through lack of trying 4 visits Remember I’m sure some of you will of experienced similar with your GP in the early days not well up on the BC it would seem are they or maybe it’s just my GP Practice

So 3 days later from the 11th of Feb in for CT Urogram then the week of the 28 th Feb Pre op and TURBT 1st March never been put to sleep before ever so that was really bothering me more than anything came through it fine was over in the blink of a eye literally you all know what I mean woke up felt fine had a catheter in for 5 days after I’ve decided I hate catheters I’m over 6 ft and really struggled with it but it was there to do a job that I’m now just waiting for pathology to see if I’m having any more treatment or whether it’s straight to surveillance or what still early days I know but I’ll hold my nerve and go wiith whatever they say is best for me I’m a male of 45 years old.

  • Good Evening  . You are in good company here. Your story will be familiar to many. The positive is that things have been identified and you have had your TURBT. Always an anxious time waiting for results. The not knowing and uncertainty is something we understand. Lots of support here as you go forward. Best wishes.

    Best wishes to All,   rily.

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  • Cheers Rily yours is a name I’ve seen a lot and read your Story you’ve been a soldier and I’ve seen the support you provided to others good for you keep it up and I will try to do same as I move through the motions now 

  • Thanks  . 10 years ago when I was diagnosed with MIBC I thought my world was over. The wonderful people on here guided me through some dark days and I will be eternally grateful to them. Once I got on the treatment path I went with the flow and took things one step at a time. So far so good. Lots of varying experiences here so always someone with an answer or just someone to chat to. Best wishes.

    Best wishes to All,   rily.

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  • I’ve had some bad days course I have lost my Father to Kidney Cancer in 2016 he was 57 years old but was ill for a while before his diagnosis over a year and was to late by the time it was found so my advise to anybody would be stay vigilant and persist persist with the doctors we all know our own body’s and know when something isn’t right hence why I have mentioned my persistent visits to my GP and the reception staff should be better trained once someone mentions a symptom of hematuria they should been seen by the most experienced and highest qualified doctor at the practice  no question 

  • Hi Wel1979,

    Welcome to the group.

    Sorry to hear about your diagnosis and the the delay in getting your flexible cystcopy.

    Yeah I hate catheters, especially the ones they use during the TURBTs as they seem to be larger. Such a relief to get them out. Although mine was only in for a few hours.

     I had to have two TURBTS before I got my diagnosis back. 

    I hope you get your results back soon and it does help when you get a treatment plan in place.

    Take care.

    Trevor 

  • Just Couldn’t find a comfortable spot on my leg for it at all Trevor but like I said I fully understood its purpose and why it was there as I watched it drain over them 5 days I really did by day two it was Clear normal colour but when I went back for removal even the nurse said it’s really ready to come out this it’s causing you to bleed in a morning isn’t it I said yes then it’s fine for the rest of the day I have also read your story and yours is another name I see frequently I’ve been like should I wait for pathology before I join in or should I just get to it and update as I go and thought no I’ll get to it it’s nice to chat about things and share with everyone I’ve already made my mind up at a early stage if it gets out of hand I’ll just go straight for RC no question I’m not bothered what I look like or the inconvenience I just want to stick around as long as I can for my wife and my sons and whatever gives me that opportunity I will go down that road 

  • Wel1979,

    I was a young registrar that recognised that pee in my blood could mean cancer. Some of the older GPs can get very set in their ways, sometimes it takes a fresh pair of eyes,,,,,,

    Leo