Worried about cytoscopy after BCG treatment

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Hi all

I finished my 6x BCG induction course on 3rd June and have my flexible cystoscopy on 21st July. I started off with a large G2pTa tumour (mostly low risk with some higher hotspots) back in Jan 2024, after TURBT i had a 6 week course of Mitomycin C. The cystoscopy in July showed a very small recurrence which was removed via TURBT in September, the pathology showed low risk G2pTA and I was simply put on a 3 month check. December check was clear, however March 25 check showed another recurrence and this time it's back to the original G2pTa with some higher risk G2. Hence the BCG treatment.

I didn't really have too much in the way of side effects from the BCG and I worry that this means it hasn't worked for me ? So I'm thinking all kinds of negative thoughts prior to the Cystoscopy. Probably not helped my dear brother dying 2 days ago of MND - just 15 months after diagnosis.

I know recurrence is very common but right now my head goes to the worst outcome. Not sure why I'm posting as I'll find out soon enough but hope the good folks on here have some words of wisdom x

Halofan 1 month ago

Hi Bicyclegirl, my sincere condolensces to you on the loss of your brother . My heart goes out to you.

Its always a worrying time when coming up to cystoscpoies or scans, hoping the bcg has worked and scrutinising every symptom and reaction to treatment. If it helps at all , I had very little reactions to the first 6, I was expecting alot and it didnt happen as bad as i thought it would. I havent had any recurrences now since diagnosis in 2023. I did have more reactions by the time i got to number 10 bcg etc, but the first 6 were ok. I hope you have no further recurrences and i wish you good luck with your flexi. Take care of yourself, you are going through so much right now xx

Much love Angela x

Bicyclegirl 1 month ago in reply to Halofan

My sympathy on the recent death of your brother too x

Halofan 1 month ago in reply to Bicyclegirl

Thankyou Bicyclegirl xx

Much love Angela x

winkers60 1 month ago

Hi Bicyclegirl,I’m so sorry your brother has died.Wishing you well for your cystoscopy.Love and hugs Jane x

Simon C25 1 month ago

So sorry to hear of the loss of your brother and all you've had to go through yourself.

It is only natural to worry about what if's and all the different case scenarios. But I find it doesn't actually help worrying about them, of course it is extremely hard not to. But I try to put these things to the back of my mind until I have the actual answers from the people who should know and then worry about it if and when things happen.

Admittedly that doesn't always work out but a lot of the time it does and can just carry on doing normal daily life stuff and forget about my worries.

There will always be the uncertainty and anxiety of waiting to know what's next it's just a part of the journey we are all on in various forms, sometimes it's a beautiful fresh piece of tarmac that's just been laid, quiet and peaceful, others it's like the majority of our roads, craters of potholes and more uneven than the surface of the moon.

I wish you lots of strength to deal with things your going through. And wish you the best for your results of the latest cystoscopy.

________________

My name is Simon.

Much love and hope to everyone past future and present.

I also hate autocorrect and hope people can make sense out of my posts when it changes half the words I type.

Bicyclegirl 1 month ago in reply to Simon C25

Thank you so much x

JoyceF 1 month ago

Hoping for good news for you after the 21st. It’s hard isn’t it not to be anxious? I don’t think having no bad reaction to the BCG means it’s not working. Lots of lovely people on here have found the early treatment not too hard. I feel for you as I now have a date for follow up TURBTS after BCG. You are not alone x

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