Reoccurring bladder cancer - feeling fed up!

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I’ve just found out at my regular check up that I’ve got a reoccurrence of my bladder cancer. I am currently waiting for surgery. I know it’s treatable and it will be fine, it looked much smaller than previous tumours when I saw it on the screen and I’m reassured that it wasn’t there at my last check 6 months ago.

However this will be my 6th operation and 4th recurrence since 2019 so I know this process well. I’ve had TURBTs each time and regular check ups throughout the last few years but for some reason this reoccurrence has really knocked me mentally.

Ive been feeling pretty exhausted, worn down and getting pain in my back (I’ve not had this before with bladder cancer) and I’m not sure if it’s related or just a coincidence. Has anyone else experienced this?

I also wanted to ask about small reoccurrences, I know the nature of bladder cancer means that it’s likely to return but I’m struggling with this being back and wanted to ask how many reoccurrences others have experienced?

I’ve been lucky they have all been caught early and they have been either low or intermediate risk and all contained in the bladder thank goodness. Despite this I feel so fed up, it feels like it just keeps coming back and I feel like because I’m younger than most people my consultant treats (30s) it’s hard to find anyone else to relate to. Even my consultant isn’t sure what to say and just reminds me she had 90 year olds who she’s treated for 10 years +.

Im not sure what I’m asking for on here, other than to reach out in the hope that someone understands the frustrations and difficulties. I feel a bit guilty feeling so worn down when I know I’m lucky it’s not worse. I just feel like with each reoccurring tumour I feel more scared about what’s next. I’m worried it means I’m likely to get cancer somewhere else and I just feel worn down by the constant need to urinate and then the bigger picture of yet another operation.

Interestingly this time and last time I had no visible blood in my urine like the others…. Just microscopic. Has anyone else had this too? It makes me nervous that I won’t pick up signs of other reoccurrences! I suppose that’s why we have frequent check ups.

Thanks you so much for any support, I just wanted to reach out.

Tinkerbell221 over 1 year ago in reply to Serenitystar

I didn't have a Mitomycin wash after my first TURBT in Feb 2023, but I did after my second one in April 2024

I think you should ask why you haven't had it after 4 occurrences

Good luck, Tina x

3LittleBirds over 1 year ago in reply to Serenitystar

Completely the same - I don't really understand why my consultant thinks it's better to monitor and have repeat TURBTs rather than having other treatments to try and prevent recurrence altogether. I will make sure to question him a bit more on this when I am back next week and would be really interested to hear what you find too.

If I think about my results I can work myself up with worry. Having 2 tumours this time (and out of the blue) has been a bit of a shock to be honest. I am generally an optimist so I don't really prepare myself for anything other than the best news - which is great, unless it's something different and then I'm unprepared! I like to go to my appointments on my own but am learning that I only come away remembering the odd headline. After my first TURBT the consultant went throught the notes with me and showed me photos - this time he was very brief, telling me that they were both small and he took biopsies from a couple of other sections too and would see me soon in clinic. So I haven't really had much to go on during this waiting spell.

I'm finding that daily life is best when I just keep on with routines. I have a busy job, which involves travel, and I have 2 young teenagers - that all helps to keep my mind busy. I sometimes find I am not in the mood to do things so I just give myself some grace and give it a miss (and have a day in my joggers)! I do count down the days to my appointment though - am sure we all do the same.

I find that being really open about it helps - I think whatever cancer you have people seem to go through the same emotional turmoils so people can often relate. I think it's all the uncertainty and lack of control we have. If only it was being caused by something we could stop doing!

Andy 319 over 1 year ago

I had a possible recurrence in my last regular check-up after nearly 3 years in the clear from non invasive bc and some follow up bcg courses. It was noted at the check-up that it was tiny and that it may not even be cancer. I had a turbt last week and the chief urology surgeon admitted there was really very little to do and he didn't think it was cancer.

Even if it is a recurrence I'm not unduly worried and confident they've nabbed it. I'm very much of that state of mind that I either have cancer or I don't have cancer, recurrence, remission don't really come into it for me as I look at it in black and white even if that's not quite how it works in reality.

I do appreciate the regular check-ups though, traumatic as those days are with that punch the air feeling from an all clear or the bad news which usually isn't too bad as things will generally be at a very early stage.

Good luck, there'll be good times ahead I'm sure

furbabymama over 1 year ago in reply to Serenitystar

Hi Serenitystar

My BCG was OK yesterday. I kept it in for the full 2 hours. No major problems yesterday and today I just feel very tired. The side effects can get progressively worse the more instillation you have but if I want to keep my bladder ill just have to try to out up with it. 1 down and 23 to go .

Keep asking questions of your Medical team to ensure that you are on the correct treatment pathway and don't feel guilty for asking. Its your body, no-one else's.

Love Ade xx

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Reoccurring bladder cancer - feeling fed up!