Hello All
Newbie here!
On May 1st this year I had a cystoscopy which revealed a 2cm papillary bladder tumour.
The consultant explained what this meant and the next steps regarding treatment. He explained that I would have a TUBTR along with a single dose of intravesical Mytomicin immediately after the procedure, and that this would be to deal with any residual cancer cells and reduce the risk of reoccurrence.
I had my TUBTR on Saturday May 10th. I signed the consent form for TUBTR and Mytomicin. However, when the consultant came to speak to me after the procedure he told me that they hadn't given me the intravesical Mytomicin as they weren't able to do that at weekends...
I was still a bit groggy from the GA at the time and didn't really question him about it... I really wish I had now.
I had my F2F consultation about the pathology results on May 27th. It was a NMIBC, low grade (good news) but they did note it had a solid base. They explained there would be no further treatment at this point but I would be having 12 weekly cystoscopies due to the high recurrence rate.
Obviously Im now concerned that the lack of post procedure intravesical may increase the already significant chance of recurrence.
Has anyone else had a TUBTR without the the single dose Mytomicin?
Hi Carravagio and a warm welcome to this friendly and supportive group. It is not uncommon for people not to have a post TURBT Mitomycin wash. There are various reasons why they don't use it. I would take it as a positive that no further treatment is needed other than monitoring. Best wishes.
I also didn't have the chemo drug I to my bladder I had a 1cm tumour, for me it was due to them having to resect my left ureteric orifice why they could not install the drug.
He did say it is usually done as a precaution. To prevent recurrence but does not always get done.
Said if any further recurrences it would be done on any follow up TURBT's if required.
Also did not feel a 6 week instillation one at a time would benefit me as it was in my case which I was happy with as 6 sessions over 6 weeks is a lot with work.
I had a very slight recurrence in my anterior urethra which was washed away with water irrigation at my mY next cystoscopy under GA with possibly biopsies being taken. No biopsies were needed.
Every case is similar yet somewhat different so you have to trust in the process.
The drug helps to prevent recurrence but does not guarantee no recurrence either.
Good luck and don't feel bad about asking any questions from your hospital even if just for reassurance.
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My name is Simon. But Si is also fine, in fact you can call me anything you like it’s only a name after all 
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.
It would be nice to have no further treatment that's for sure but I'm on 3 monthly cystoscopies to keep checking for further issues. And those we could all do well without that's for sure.
It's just a waiting game to see what happens in the future.
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My name is Simon. But Si is also fine, in fact you can call me anything you like it’s only a name after all
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.
