Its been a bit of a week!!

Dear Ade, my husband's was G3 Pta also, though I don't know if quantity makes a difference...he said his entire bladder looked 'like inside out cauliflower' when he saw  it at the first cystoscopy. He had a TURBT, then 6 BCG. Wait six weeks for bladder to calm down and another cystoscopy. Ironically fortunately, due to strictures they gave him a GA for the 'check' cystoscopy, advantage, as they found a new papilloma had grown even in that shortish time, they were able to turn the cystoscopy into a TURBT so we didn't even know till he woke up.

Then, they offered him more BCG, or bladder removal, or Mitomycin. He too [and I] were adamant to keep his bladder if at all possible. Not understanding then what I have learned from this forum, we felt the BCG had 'failed'. Whereas in fact BCG is like using weed-killer on a path. It deals with the original crop of weeds. But more may grow later and simply need a repeat treatment. Yes it is true there is some risk of new growths being more aggressive, but at least the regular checks all patients get have a chance of picking them up in fair time. A couple of times my husband has had red patches visible, so they have got him back at 3 months instead of six. But neither time has it turned out to be anything sinister. To return to the '3-equal-ways' choice, he opted for Mitomycin. This has kept him clear [without repeats like BCG] for the last around five years, despite not even being able to tolerate it heated nor retain it for the target length of time. So that's another thing to ask your team about.

Best wishes,

Denby

Hi Jane,

A note book is a great idea.

Have a lovely Easter Weekend.

Happy Easter to you and your family.Love Jane x

Hi Jane, 

It's just lovely to be able to talk to all you lovely people who have been through this.

Thank you so much for taking the time to reply.

Take care

Ade xx

Hi Trevor

My lovely Hubby comes with me to all my appointments and I do take a notebook with all the questions I want answers to already written down so I don't forget to ask something.  Unfortunately for the TURBT surgery, they are all done on a day ward and family are not allowed to stay until I go to theatre so Hubby does not get to meet the surgeon or have a chat with him. That is a bit frustrating,  but hey-ho.  

I can't say that I'm relaxed about the thought of bladder removal, but I think I'm becoming a little bit more accepting of the prospect.

I'll get Wednesday done and then see where that leaves me.

Happy Easter

Ade xx

Hi Ade,I’m glad you are finding it helpful here.Let us know how you get on next week.Love Jane xx

Hi Denby

Thank you for your insights. It's like negotiating a mine field, not knowing which is the right way to go. The way that we have thought about it is that the surgeon gets to have another look at my bladder during the re-section on Wednesday which is 4 weeks after the first. Then I can start the BCG and have Cystoscopies at intervals  to check that the BCG is working. Hopefully it will and I can keep my bladder, but if it doesn't then at least I will have had more time to get used to the idea of a cystectomy. 

Hope you have a Happy Easter. I'm spending it with family and friends then I can get Wednesday over and done with.

Take care

Ade xx

Hi Jane,

This forum is truly an amazing place. A Godsend!

Yes, I'll let you know how Wednesday goes. Hoping not to pass out this time and have the Crash Team there when I come round....Oops!!

Happy Easter to you.

Ade xx

I hope you don’t pass out that must have been frightening to see the crash team.Have a lovely Easter.Love Jane xx

Hi Jane

It was frightening!. I passed out in the bathroom on the ward from the excruciating pain of passing urine after the TURBT. When I came round there were 8 pairs of legs including the Crash Team round me. I could hear people talking and saying "Oh goodness she looks awful!" "Has she had a cardiac arrest?" And I'm lying on the floor thinking Oh God! I hope I haven't had a Cardiac Arrest!! I hadn't but my blood pressure had dropped...a vasovagal episode they called it. After that I had to use a commode for the rest of the night. Is there no dignity in this disease??? Haha xx

Anyway, onwards and upwards as they say. 

Love to you all

Ade xx