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 My boy, I had 3 growths in my bladder which were removed through TURBT and 6 weeks later TURBT biopsies followed by BCG treatment. Initial 6 BCGs were hard going, then a 3 month break followed by another 3 installations, it can feel like hard going during the treatment but I'm here 3 years on and now moving to half yearly flexis rather than every 3 months. Stay positive as much as possible which is not easy and beware of the fruit and drink that irritates the bladder during treatment (for me lemon, raw tomatoes, carbonated drinks, tea, coffee and alcohol).
Take care and keep your head up.
Take care and look after yourself
Stu
He is so young, i am sure your heart is breaking. I am 2 years into my journey with high risk bladder cancer and I am doing very well. Its a bit of an emotional rollercoaster at times but very much worth it so far. If you click on my profile i have detailed the experience so far. I have been lucky the side effects for me have been minimal. I wish you and your son the best. stay with the forum, the lovely people on here have helped me so much. sending you love and care
Much love Angela x
Hi Jessie
Thought I'd just chime in to say I'm on a similar path and timeline. I was diagnosed with p1G3 4cm tumor back in October. I've had 2x TURBT and just finished the 6 weeks starter course of BCG. I've had some tiredness and lethargy, and a sore throat/cough at first which cleared up quickly. Overall side effects not too bad at all and I'm planning to return to work soon.
Hope things are going OK for you
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