Getting a bit fed up with waiting...

Hi Rob, 

Best of luck on Wednesday, sorry to hear things are dragging on for you.

I didn't actually get a result from my first TURBT as they couldn't distinguish where the sample came from or something along those lines.

I had my 2nd TURBT in February 2023 and started my BCG induction in April 2023. 

I think they probably want to discuss the options, after my 2nd TURBT consultation they discussed both RC and BCG, but I struggled to take alot in, but took my wife with me which helped.

So for tips, if you can take someone with you, maybe take a note pad and a pen.

You will get documents about the BCG processes. There seems to be a variety of total maintenance instillations depending on trustis so might be worth asking how many etc.

The discussion on RC was an option that they also discussed with me. I was adamant that I didn't want to lose my bladder (although reading other peoples experiences on here have opened me up to this option should it be needed).

I hope you get some answers soon.

Keep us posted.

Trevor 

Hi Trevor

Thanks for your input and advice.  I think I'm like you in that I'm still in that phase where I'm not wanting to lose my bladder, but as you point out the people here that have had RC do appear to be coping well.

I'll keep my ears and eyes open and take someone with me.  In some ways it's good that the consultants go through all the options at least I'll know where I stand.

I've already been given all the booklets and info after my 1st TURBT so I think that led me to think we'd go straight to treatment. Still the more knowledge I have the more in control I feel.

Thanks

Rob

Hi Rob,

I hope you get further forward after Wednesday. It’s horrible having to wait for treatment to start and people do feel better once they know what is happening. It is a good idea to take someone with you as an extra pair of ears. Best wishes and let us know how it goes.

Jane x

Keep an open mind - I often had specific questions, then consultant would say something that completely changed the situation. So I would say in general ask pros & cons, risks & benefits, side effects, prospects for cure (short & long term). Then you can weigh up in the light of your personal circumstances and preferences. Hopefully they won't pressure you to make an instant decision. From their point of view, there is now no urgency for treatment, so hopefully they are taking the time to be sure you are informed and happy with your choice.

I was in the same position and given a couple of weeks to decide BCG or surgery. Then I had an appt lasting a couple of hours, first with both consultant & CNS, then just CNS, discussing surgery. After that I then had a few weeks deciding stoma vs neobladder. Best wishes.

Hi Jane

Thanks for your best wishees and I will let everyone know.

Rob

Hi 

Thanks for the sound advice. Consultants and CNS have been very good so far and I'm sure you are right and thatthey will be making sure I have all the information I need. I'll certainly take my timeand way up the pros and cons and hopefully make the right choice for me.

Rob

Goodness that sounds very comprehensive. They told me my result 5 weeks after the TURBT - muscle-invasive and bladder out before the tumour escapes. The consultant drew us a picture of the tumour and said she'd tried to get it all out but couldn't.

I (in shock) said that means a stoma then? They said yes. I turned to husband and said don't worry I'll just have to learn how to manage rhe bags then. He gulped and then the CNS took us away to tell us what happened next - chemo then op.

No one mentioned neobladder (though it was in the booklets etc) until later on when the surgeon put it on some documents saying I was having it and I said no (reasoned it was too fiddly for me to feel comfortable with it).

I had time during the chemo to change my mind of course. But never did - just told myself lots of people manage OK so I could too. To be honest I was just glad it was treatable. (50 years before, my mother's bladder cancer was found too late to do anything as it had spread widely. I'd stopped smoking then so thought it wouldn't happen to me so it was a shock when it did.)

Haven't looked back or doubted my choice.

Good luck with the consultation. 

Latestart

I was told on diagnosis day that the MDT team had already met and that I would need bladder removal. A few weeks later I met the surgeon who discussed the cystectomy and placed me on the urgent list. It was all very quick.

Jane x

It all depends of stage & grade - I guess I was lucky to have the time to consider all options. When I was chafing at more tests & delays, registrar said if it was more urgent, I wouldn't have had the same choice. 

Aw Rob I really feel for you. It’s hard. As far as I know seeing the consultant is the way it works because they have to offer removal of the bladder. My consultant told me that they were being sued because a patient said they weren’t offered the removal of the bladder. I amnt very experienced but I don’t think there’s anything sinister about what’s happening. 
Tips? Keep going. Someone said to me to  try to think what if it all goes better than I fear. I’ve asked myself this many times over the last 8 months. Sending you calm and strength x