New Diagnosis

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Hi all,

Nearly 4 weeks ago I noticed blood in my urine. Contacted my surgery who asked for a urine sample and gave me antibiotics for a suspected UTI which I must admit I didn’t think it was. Anyway a few days later the culture showed no infection and I was referred to hospital as an urgent suspected cancer. I got a cytoscopy quite quickly - 1 week after referral.  There the consultant showed me a growth in my bladder - saying don't be alarmed as it's high magnification.  He explained I would have MRI and CT scans and then the Turbt procedure. Two days later I was shocked that his letter said I had a 6cm TCC. Since then I have just imagined the absolute worst. I had an MRI a week ago with no feedback , CT scan due Wednesday and an update of 21st Feb. I'm just going crazy , from no idea I had cancer to this ! I visited my GP to get some coping meds earlier this week and I don't feel much relief and maybe they are making things worse. I am struggling so much to try to get some acceptance that I cannot do anything about this situation but go through the process. I have had no contact from the Urology department,  nobody to talk to. My partner and family are great but I fear I'm stressing them too much.

Not sure what I'm expecting from posting this but at least you guys will hopefully understand my terror

  • Hi   and welcome to the group although sorry you find yourself here, but you will get plenty of support as you go forward. Firstly be aware that bladder cancer can  be treated successfully and many of us have been there and understand how you are feeling. It takes a couple of weeks for scans to be analysed so don't worry too much that you have not heard anything. They like to get all the information together to make a plan going forward. Once you have had your TURBT you should get a consultation to see where you go from there. Lots of us here and always someone with an answer to any questions so please ask if you are not sure about anything. It is the early days of uncertainty and not knowing which can be the worst. Once you know and  plan is in place, it gives you something positive to focus on. Best wishes 

    Best wishes to All,   rily.

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  • Hi Bicyclegirl,Welcome to this friendly group.I hope you will find some support and help here moving forward.Best wishes Jane 

  • Hi , I was diagnosed with BC in 2020 . Like you it was a complete surprise to me and a shock to the system . After 2 TURBT and so far 24 BCG treatments i'm doing fine only 3 more BCG to go ,then annual check ups . It's a long journey but you will get through it . You will have a lot more questions than answers I'm sure , this group helped me a lot and am sure will help you .ANYTHING we can do to help just ask . Dave 

  • Hi Bicyclegirl, I was diagnosed April 2023 and I cant believe all that time has passed so quickly. Like you I watched the screen and the doctor reassured it was magnified and I asked what it was. It felt like I had been hit with a sledgehammer and the panic welling up in my chest at the diagnosis.
    I logged on here that day and these guys have carried me through 3 TURBT’s and treatment and the waiting for results. I dont know how I would have got through it without them. I am doing ok, about to restart immunotherapy treatment BCG and carrying on with life. Going to berlin for the footy in july, going to rewind festival in august.
    You will get through this. It definitely felt less terrifying when there is a treatment plan in place. Have you been given a specialist nurse ? if so I would definitely contact her/him. 
    Sending you a hug and wishing you all the best

    much love to you Angela

    Much love Angela x

  • Thank you guys, I am just convinced that every thing I'm feeling like aching arms, sore throat etc are because it has spread and is everywhere.  I haven't had any contact from the hospital other than appointment letters and the original consultant letter I mentioned. I have a pre op assessment tomorrow and  CT scan on Wednesday.  Part of me doesn't want to bother them and potentially find out how bad it is but as I'm imagining the worst anyway probably nothing to lose. The beta blockers make my stomach very upset and my biggest problem is very little sleep even with prescription sleeping tabs. Imust admit to being rather shocked at my response to this - I'm by nature a problem solver, my career being in engineering/science. Although I have always had an issue with anxiety,  so maybe not such a surprise. I have arranged for some private therapy to try to help me. I feel acceptance is what I need to achieve - here's hoping 

    Jane x

  • Hi Jane, I think your response is absolutely normal. It is shocking to be given this diagnosis. I know my mind was in overdrive and like you every little ache, pain or different burp I questioned was it spreading. I knew I would need all the emotional help i could get. Macmillan are great, my specialist nurse is brill and I have a meditation and relaxation app on my phone. I do relaxation everyday to keep a lid on my fears.

    I dont know if you have a Maggies near you to drop in to. I also found if i planned things to keep me busy , so i wasnt thinking about it all day.. i learned a long time ago to say ‘ thoughts aren’t facts Angela’ .

    sending you love, hoping you can take one day at a time Angela xx

    Much love Angela x

  • Thank you, is your specialist nurse from the hospital ? Yes one day at a time. I have so much to be grateful about - loving supportive partner, retired ( I'm 64) so no work worries. I don't know how people with kids, jobs etc can function - hats off to them for sure x

  • Hi Jane

    Yes , she is with the urology dept. I wonder if you were to ring your urology dept and ask if you have one ? It cant do any harm asking . 
    much love to you Angela x

    Much love Angela x

  • Hi Bicyclegirl [I was one of those till my knees gave out...] and welcome. Did the GP explain that many what I call head meds, often DO risk making you feel worse before you feel better? I don't know about all of them, but perhaps a word with a friendly pharmacist to find out how long they think it is likely to take before the coping meds actually help, might be useful and reassuring? I think private therapy is a great idea, I hope it does help.

    Denby [OH to bc person, 5 years clear after a whole bladder-full of tumours]