Bad news

It's always horrible to be feeling like things are going good and then everything comes crashing down, it's normal when your told things seem to be good and then given further bad news. It's is a rollercoaster coaster journey for many. 

Myself I had one tumour grade 2 low removed and they told me everything was good and it had been removed and recurrence was unlikely. 

Yet I had one very small recurrence in Jan this year, 6 months or so on from my TURBT, then had several small ones and one large one removed just in July. Now 6 weeks of Mitomycin which I am currently having to try and stop recurrences. 

So it's never plain sailing and things change sadly. But don't be so downhearted with the news, try and deal with one thing at a time. Easier said than done I know. 

But plenty of people with more aggressive rumours get through it and get an all clear as well. 

Hi CHRISTINE S . We know how easy it is to forget what we are told. Try not to panic. A follow up TURBT is standard in most cases just to mop up and the new biopsies give them a bigger picture to come up with a more accurate diagnosis. The follow up is usually a lot easier than the first. You would have been give a stage as well as a grade which is important. Best wishes.

Hi Christine,

Just to repeat what rily said, but two TURBTS are pretty common. I'm really not sure why they just don't mention it during the initial discussions.

I had too have two TURBTS also, as they needed additional samples, definitely a bit worrying and frustrating at the time, but the 2nd wasn't as invasive. Although I did stay overnight for both.

If it's any comfort I was diagnosed grade 3 non muscle invasive and just had my 8th biopsy with the results back on Monday, and not wanting to tempt fate I've had no reoccurrence on the previous 7 and keeping things crossed for number 8.

Also don't beat yourself up about forgetting what was said. I didn't really take much in either, was a blur but fortunately I took my wife with me.

Wishing you all the best.

Trevor 

I was in that position - thought I knew all about BC because my brother had had low grade BC for a few years. So I felt really sick when the consultant told me mine was G3, needed second TURBT, might need bladder removal. (Fast forward and I actually chose surgery in the end!) Don't worry about not taking it all in this time, there will be a future opportunity.

You will probably find that the second TURBT is a bit easier than the first. There won't be a chemo wash this time. The second biopsy will check for any muscle involvement, then there will be an MDT meeting. After that, you should have a consultation to discuss next steps. Try not to think too far ahead, the good news is that they have found the BC and it is being addressed. Hope all goes well.