Hello
after initial tests and a TURBT procedure, I was this week diagnosed with grade 3 non-muscle invading bladder cancer. I have made the mistake of googling and have terrified myself as prognosis does not seem good. I am confused because I was told all the tumour has been removed and I will start a course of BCG immunotherapy next week. If all the tumour has been removed and this immunotherapy is preventative, why does the prognosis not seem great? I understand there is a good chance of the cancer will recur, but I am told that I will have regular checkups in relation to this.
I asked my specialist nurse could the cancer spread in theory while undergoing BGT and she said in theory yes. I asked why they would not go straight for bladder removal and she said at this stage, it is overkill. I am however really scared and would appreciate anybody who’s been through this to give me some advice. I asked the nurse what the positives were and she said it was early stage and has been removed. she then mentioned doing a chest x-ray although my initial CT scan showed no surrounding organs were affected. She said this is standard and now I am scared this is another worry.
My family are so upset and everyone is so sad and I am trying not to get myself into a state but I’m not sleeping and just feel so anxious about the future. I understand that the high grade cancer is rarer and may not respond as well to,treatment. The surgeon actually came to me after the TURBT procedure and said ‘don’t worry, it was v small (1 cm) but after the pathology results it is a different story. Is this grade 3 curable? Many thanks for any responses.
Hi Derby74, I understand how you feel, I've had 9 BCG Instillations and it is a tough therapy, it makes your own body fight to prevent any more cancer cells growing so it is understandable why you feel tired and a bit under the weather. Along with that is the thought of the long duration of the treatment and the stress and anxiety that goes with it. Give yourself time to rest and relax and to do little things that make you happy. We have all felt (or are feeling) the same but we are all here to support you.
Sending you a warm hug
Love Ade xx 
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I am so sorry to hear - he’s so young. Sending you positive thoughts and love ️
