Hiya!

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Hello everyone, 

Firstly, I’d like to thank everyone for all the useful information, commentary and support on here. I’ve just started reading it but there’s a real camaraderie that shines through. 

I’m not sure I should be posting here quite yet, as I’m still waiting for my diagnosis. After recurrent issues with my bladder not emptying properly stretching back a good few years, I got in touch with the doctor again recently as it seemed to be getting bad again - what seemed like lots of UTIs and pain. They sent me for an ultrasound and I was lucky enough to get in on Monday, and the results were sent back urgently as there’s apparently a 1.2cm lesion in my bladder.

I also had some blood tests on Tuesday and they’ve come back with borderline high red blood cell, white blood cell and leukocyte readings, as well as what seems to be non-diabetic hyperglycaemia. I don’t really understand what all that means, but I’ve got to go back for more bloods in a couple of weeks. 

I've been given a referral to the urology department at Derby Royal Hospital and an appointment for a week on Friday, but no detail as to what this will entail yet. It was fairly scary seeing the words ‘urgent’ and ‘cancer’ on my notes on the NHS app and wasn’t something I was expecting to see. I’m guessing the lesion will have to be checked out to see if it is malignant or not. The referral also mentions ‘suspected renal cancer’, but no one has spoken about this to me yet - just the bladder lesion.

Anyway, on the one hand I’m really pleased that everything is moving, and on the other hand a bit in the dark as to what it means. Obviously I’ve done the whole thing of going down internet rabbit holes, which is what led me here, and it seems that benign lesions in the bladder are quite unusual, but I’m still hopeful that it might prove to be so, and also feeling positive that something is being done to address the problems. I’m in a fair bit of pain and discomfort around my groin, abdomen and back, which is what really encouraged me to go back to the doctor after a good few years of investigations leading nowhere. I’m hopeful that, whatever the outcome, that can be addressed so I can get a decent night’s sleep again ;) 

I know it’s hard to make a prognosis without any of the investigative data, but I’d be interested to know the experiences of others and what I might expect from my referral, and also if anyone has had a benign lesion that’s been treated. 

Thank you all again for such wonderful wisdom, insight and openness in these forums. It’s been really helpful to read and to see the positivity shining through from so many people. I wish you all the best in your individual journeys Slight smile

-matt

  • Hi Matt. Just to echo what Jane says. Not what you wanted but it has been identified now and your treatment starting with a TURBT will begin. The procedure is not too bad in the great scheme of things and the results will determine a treatment plan which gives you something positive to focus on. Best wishes.

    Best wishes to All,   rily.

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  • Hiya Matt 

    Sorry to learn you have had a Tumour identified the Group is very supportive and will be able to help you with any concerns you may have regarding TURBT 

    I myself had a 2cm tumour identified in February Removed in March had a 2nd TURBT in May was diagnosed as Superficial and now it’s a case of follow up care for me 

    I was extremely apprehensive about TURBT myself but no where near as bad as what I thought it may of been I’d never been put to sleep either and that was a worry but it’s really straightforward best of Luck with your procedure 

    Ste 

  • Thank you Rily, much appreciated. Definitely feels positive that things are moving - I’d probably feel more frustrated if they hadn’t found what was causing the issues, as weird as that sounds. 

  • Thanks Ste, appreciate your kind words and support. Great news that you’re at the stage of follow up care. That must feel good. Take care and keep smiling Slight smile

    -matt

  • Hi Matt, just read your post, firstly, you will get a lot of information and great advice from this lovely group. I’m really not sure where I would have been without them. I can honestly say from my own experience, that the not knowing is definitely the worst part of this journey. I’m just at the stage of getting a date to start my treatment, which is a weight off my mind. There will be ups and downs and plenty of overthinking…this group will support you all the way.

    truly sorry that your here, but sending you positive thoughts.

    all the very best Nigel

  • Thanks Nigel - positive thoughts being sent back to you too. 

    -matt