Recurrence of bladder cancer

Hi skyblue62 and welcome to the group although sorry to hear of a recurrence after all this time. We do often see recurrences here, but it must be a real disappointment after being clear for so long. This does show the need for us to be constantly checked. Hopefully it was caught early and has been dealt with. Good luck with your results. We know how frustrating the waiting can be. Best wishes.

So sorry to hear you are back to square one after 6 years of being clear. That must really suck quite a lot to be blunt about it. 

But as you probably know the waiting for the results etc can be one of the worst bits. 

I guess it is one of those thighs that can go and come back again with no rhyme or reason, or indeed go and not come back at all. 

Thanks

They stopped checks 18 months ago.
My GP referred me under the 14 day rule due to UTIs. I have never had any other symptoms.

I argued with them in2023 that they should not stop testing but the said I had had too many tests already.

I don't know I mean I get the checking but the frequency for me is going to start causing me issues with being off work a few days every 3 months if I'm honest. 

So it's hard really as to how often it should be checked on etc, I thought it would be more case dependant but it seems it's just 3 monthly checks until such a time they feel things can be scaled back if all clear. 

It obviously costs the NHS for every check and I feel like it's a waste of resources when it comes back clear. But when it isn't clear then you feel the opposite. 

I don't really know what the answer is but I would have expected maybe other ways of monitoring it maybe, rather than a cystoscopy every 3 months but it seems that is the best way to heck even if it's possibly one of the worst ways to have it checked. 

Then again this was all new to me last March as never really ever spent any time going to doctors or hospital etc. 

Hi Skyblue62 

it’s really Strange how the hospitals all do different things and GPs etc I am 17 months since diagnosis and on surveillance and was told at my last check up I would be on surveillance for 10 years and you are back relying on primary care after 5 years which let’s face it the GPs aren’t clued up totally half the time they take an educated guess it took me 4 visits to get a referral good luck with your results and fingers crossed they’ve dealt with it 

Ste 

That is indeed something I have learnt since being on here that the way things get dealt with vary wildly on hospital area and doctors. That is for sure. 

I am very sorry to hear about your recurrence. With my hospital it is 5 years too because the oncologist follows the American guidance. But apparently some only check for 2 years.

When I moved to 6 monthly reviews earlier this year she said come back earlier if you need to and when I asked what to look for it was swelling in glands, pain etc. As I no longer have a bladder it would recur somewhere else though if in the urinary tract it would likely be shown by utis or blood in the stoma bag.

I hope you get things sorted soon.

All the best,

Latestart

Hi skyblue62,I’m so sorry you have had a recurrence.I hope something can be done to help.Best wishes Jane 

Thank you all for your good wishes.

After my first two checks I was put on annual checks until they discharged me.

My results appointment is with the specialist bladder nurse.

Idid ask to see the photos of my bladder when it first occurred to compare with this time but I have not seen either.

Ikeep thinking what if they had tested me 6 months ago, would they have found anything then .

Best wishes to you all

suppose a good think your doctors sent you on a 2 week fast track matey at least they have picked it up now been going threw bladder cancer myself for 5 years