Recurrence after BCG

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I was diagnosed last March with bladder cancer .I am 74 and in good health , I had two large tumors removed then a follow up four weeks later where they removed more tissue from the tumor sites . The tumors were superficial but with a high grade .i have stage1pT1G2TCC  so i had my first 6 week course of BCG treatment in June/July with a follow up in September for a flexible cystoscopy where the consultant could not see clear enough in the bladder due to debris floating around so a rigid cystoscopy was arranged 3 weeks later.During this cystoscopy they also took some biopsies and the results were 'no evidence of cancer'so Iwas to continue my second set of BCG treatment which happened in November /December. my next flexible cystoscopy was in February where something suspicious was seen and so more biopsies were taken . I now have received a call from the hospital saying there is a recurrence of the cancer and was told I  would receive an appointment to come in to have a rigid cystoscopy and scrape away the growth they found .I don't know how bad it is yet but can't stop thinking what the next step might be.Has anyone had similar outcome to this . Cheers 

  • Hello and welcome to the group. Sorry to hear you may have a new recurrence. We do see similar here often. The positive is that it appears to have been caught early and they are looking after you. Difficult for anyone to sat what the next step would be, but in many cases people continue with BCG or alternatives. It is the worry of not knowing that can cause the anxiety. I am sure someone will be along to share experiences. Best wishes.

    Best wishes to All,   rily.

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  • Hi again just an update .I had a rigid cystoscopy in April and the result came back ' Reassuringly your biopsies showed inflammation only with no evidence of residual disease ` . I then had a C.T. scan in May and the result came back as ` showing no evidence of recurrence within the upper urinary tract , no abnormal lymph nodes were seen or concerning bone lesions `.I have now seen the oncologist who explained the options for me ,one was bladder removal or the BCG again and iv`e gone with the BCG but it gives me not very good side effects but don`t feel ready for a cysectomy yet. i also have  a small lung nodule which i`ve had for over ten years which has doubled in size from 5mm in 2010 to 10mm in 2020 the Cardio Vascular department are keeping an eye on this with a CT scan yearly and are quite confident that it is nothing to serious .Does anyone know if it is common practice to be offered a cysectomy at this stage.

  • Yes it is common practice, they said it to us. But it may not mean you need to consider it at this stage. For reasons I do not know, some doctors do not mention that Mitomycin, a form of chemo, can be used in the bladder just like BCG. It may suit some people better or worse than BCG. It has been very effective for my husband, even though he started out with masses of growths and had a recurrence straight after first 6 BCG. And even though he could not keep the Mitomycin in at all heated or for the "right " length of time cold. Another thing is whether you have asked for and got or not got any help with the BCG side effects, that would make it easier to tolerate.

    Hope that is some help, Denby