Diagnosis

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I do find my mental health waiting for my diagnosis is really poor. I keep thinking because I had ruby red gross haematuria and a ++ urine dip test for blood at the GP surgery that it must mean I have some type of advanced bladder cancer and that I have had the disease for years and the haematuria has become a later symptom . I am waiting for my tests in a couple weeks and I am accepting of actually having the disease as I can see from stories on the forums that gross ruby red haematuria with a and a high reading in urine blood test always ends up with bladder cancer. I realise I should stop googling but there is such a thin line between trying to enhance your knowledge and overdoing it . 

  • Hi Phil, worth you hearing that I had such a big bleed (haematuria) that I needed a blood transfusion. It was because my previous GP had misdiagnosed blood in my urine as a gynae issue. I did have bladder cancer but despite it being missed for 3 years I have been able to keep my bladder, have the cancer successfully treated and so far all clear 7 years after diagnosis. Bladder cancer is a very treatable disease, with a range of treatment options. Fingers crossed for you too. I would keep your research limited to the Macmillan site, and the NHS where the info is carefully monitored. Google is too scary and not reliable. Hx

  • Hi philw, 

    Sorry to hear what you're going through. It certainly does play on your mind as it's a very troubling time. 

    I know it's not going to sound like it will at present but it does get easier to comprehend as time goes on. It certainly did for me. 

    I suspect you will have a number of tests early days, that will probably start with a flexible cystcopy.. which is basically a camera inserted into the bladder. It's not painful just uncomfortable.

    Then CT scan, possibly a MRI, ultrasound. This is what I had but could be different for each person.

    Yeah I googled stuff at the beginning and I wish I hadn't, it created all sorts of thought's etc.

    My symptoms were also blood in the wee, although mine was more cloudy almost muddy looking wee. I know that's probably not what you wanted to hear, but it is a common symptom.

    Saying that it doesn't always mean cancer, but the Flexible cystcopy will identify any issues.

    Please remember that even if you do get a bladder cancer diagnosis, BC can be treated, I'm still early days but my last two biopsies have come back clear.

    Please ask any questions on this forum. I'm not the most experienced, but this forum definitely helped and still helps me with my journey so far.

  • Thanyou, great help 

  • Thankyou very much for the help

  • No Dr Google it just leads to a doom loop. Just need to make decisions on clinical evidence and professional judgement. And of course the views and help on wonderful forums like this. Grinning

  • Oi, philw! My OH had up-in-the-night- so much years and years ago that then-local urology had him in and did what I would now recognise as a TURBT, said there were 'more seaweed-like growths than they had thought' discharged him with never a word mentioned of cancer, no follow up. Only after moving, so a different GP and hospital, when up-in-the-night got too trying again did he end up after considerable delay getting a cystoscopy and then treatment. He's down to six-monthly checkups now five years out. Moral, you just can't tell. So please do as others advise, stay off Gxxxx!

    Best, Denby

  • Lots of good replies so far.  I agree that having gross haematuria can make your mind run wild looking for knowledge. It's an alarming symptom but yes, avoid following too many trails on google. Information on the NHS website is reliable, as is the information available via Macmillan. When I was diagnosed in mid July 2017 I thought it was just my kidney stones playing up again. The small Macmillan 'library' at the hospital where I had my first tests was invaluable. I gingerly picked up a take-away booklet covering bladder cancer and it provided me with undramatic, factual information which helped to prepare me for the path ahead. A cancelled TURBT in late 2017 was followed quickly by a mid strength palliative course of radiotherapy, then a few months later by TURBT No 1 and TURBT No 2 another 6 months later. For me, the blood loss was a very close call - I was leaking almost as rapidly as the NHS was topping me up. Despite the situation looking like a lost cause to me and being limited to palliative treatment since 2018, I'm still here living a relatively normal life and it's now 2024. My over-thinking in 2017-18 had written me off but I was clearly wrong!  Bladder cancer is very treatable. My best wishes go to you.