Hiya!

  • 26 replies
  • 74 subscribers
  • 526 views

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 and welcome to the group. We know how stressful the early days of uncertainty can be. If you have not been sent for a pre op assessment then your urology visit would probably entail a flexible cystoscopy. This is a camera in to the bladder. Done under local anaesthetic and you will be able to see for yourself what is going on in your bladder. Slightly uncomfortable but usually painless. If a tumour is identified then the next step would be a procedure to remove things. Lots of experience here so feel free to ask anything. Best wishes.

    Best wishes to All,   rily.

    Community Champion Badge

    What is a Community Champion ?

  • Thank you so much  ! I’ve had one before, a long time ago, so at least I know what to expect with it (I had a work Christmas do afterwards, and the doctor advised that I drink plenty of alcohol to make me pee a lot Joy). Hopefully I’ll get a letter this week confirming what the appointment will be. 

    Thanks again,

    -matt 

  • Hi Matt , welcome to this friendly supportive group. Good advice as always from Rily. Hope you get your letter soon. The uncertainty is the hardest to cope with for most people. I am sure you have alot of questions and what ifs going on. Stay in touch, there is always someone here to listen and help

    Much love Angela x

  • Hi Matt,Welcome to the group.I hope you find it helpful.Jane 

  • Had my chat with the consultant today, who was both lovely and straight talking. She’s booking me in for a cystoscopy so they can see what’s what in there; there’s a chance it could be a bladder stone caused by my bladder not emptying properly, so hopefully will no more within a month or so. 

    Thank you again to everyone for their kind words and advice. I’ll let you know what they say post-cystoscopy Slight smile

    Keep on keeping on everyone. Love to you all. 

  • Hi DerbyBlade

    We will all hope for good news for you at your cystoscopy. You will be able to see the screen yourself during the procedure and the staff tell you immediately what the findings are so no dreadful waiting for results.

    Keep us informed and best wishes to you.

    Love Ade xx

  • Thank you so much Ade :) 

  • Booked in for my flexible cystoscopy on Saturday at 8am. On the one hand, I’m feeling nervous; not so much about the procedure itself which I know from experience is unpleasant but not horrendous, but more about finding out what’s in there. On the other hand, I’m happy that I have a date for it and it’s not too far away.