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 Angela, I just realised that your diagnosis was exactly the same as mine so was really interested to read your story. Were you told that the condition(s) is both treatable and curable? I think that is what my consultant said but am struggling to remember everything, thank you xx
Denby gave me such hope and reassurance when I was first diagnosed in July 22. I have aways remembered her words and those of others on here that really help get you through. Chin up Jessie you have got this with everyone behind you x
Hi I was diagnosed in 2020 with the exact same bc . Finished all my BCG treatments in June this year and had one all clear cystoscopy in August . You can get through this . Sure a thousand thoughts go through your head and it’s a big shock . Stay positive drink plenty of water . Before my BCG I always had a couple of ibuprofen and drank plenty of lemon barley water to flush me out . Chin up mate head down and crack on .
My consultant said to me that TURBT without BCG has about a 40% chance of re-occurrence and TURBT with BCG reduces that to less than 4%.
I am 4 BCGs into the initial 6 treatments and so far the side effects have not been too bad and are almost gone within 24 hrs.
Oh gosh that’s really positive, did not realise the BCG rates were that successful, Glad your treatment is going well.
That's great news . The first 6 are the hardest , I felt sore then it took a while for me to control the bladder ,always wanted to go for a pee .Soon settled down though .Its a marathon not a sprint .
After my fourth BCG, I have been feeling so tired and somehow a couple of degrees under. I haven’t any get up and go. The urology nurse said rest.
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