On St Valentine’s Day

Hi all

I need some encouragement please.

It’s 4 weeks since I had my last TURBT and I haven’t received any biopsy results or indication of future treatment.

I noticed that I was in the URGENT category this time as opposed to RED FLAG initially.

I have been in touch with my specialist nurse who says my results are in but she isn’t permitted to divulge any information,

This morning I phoned the urologists Secretary who was a bit sniffy when I said it was a month since my procedure and I haven’t received any results.

Her reply was you’re not on the list to be called in for a chat about future treatment and there’s  lots of other people in the same situation as me!

I understand that but it’s not much consolation!!

Naturally  I’m feeling stressed out, so any advice would be appreciated!

Kiko

Good afternoon Kiko. I’ve looked back at my diary and find that 5 weeks elapsed between TURBT and a discussion with the surgeon . The discussion was by telephone and lasted less than two minutes. However I started BCG two weeks later and have progressed well since then . Our local hospital has been good at maintaining a time schedule and although I make reminder notes appointments are made on time . Waiting is part of the process , better to have a cup of tea rather than build up anxiety, best wishes , J.

Thank you so much for that quick response.

I have had 15 BCG treatments which went well.

Unfortunately after a 6 month period without BCG, a small tumour was detected during a routine cystoscopy.

I have now had that removed ( 4 weeks ago) and am anxiously  waiting to have the next coursed of treatment confirmed (hopefully!)

I will try to take your advice. Will drink tea and wait my turn!!!!

kiko

We appear to be in the same position, I’ve had 15 BCG and I won’t have anymore in 12 months. The last cystoscopy showed a small recurrence and I’m waiting for a turbt to clear that. Shall we put the kettle on . Did your release letter not give any indication of how your TURBT went ?

No!

I was just told that all went well and that results of biopsy would determine next move.

I’m hoping that I shall be able to continue with more BCG!

Lovely

I am also the same I have had 15 bcg treatments..haven't had any more since August 2022 ..I had a cystoscopy end of November and should have another in March..hopefully I will remain clear but if I have a reoccurrence I will deal with it .. I don't want to spend any more precious time worrying about this .. it is very hard to keep positive when you have health concerns but what choice do we have .. if I worry the outcome will not be any different than if I had not worried at all so my conclusion is worrying doesn't change a thing xx good luck to everyone on your journey ..love Tina 

Thanks Hou!

Just heard that the recurrence was high grade and that the consultant will be discussing with me shortly having surgery to remove the bladder.

It’s a shock as I seemed to be doing really well with the BCG.

I’m hoping that I might be given the opportunity to have 6 more BCG treatments before having to move to surgery.

Any advice from the forum would be greatly appreciated.

kiko

This is my dread as I feel I dealt with the bcg really well and I am now waiting for the check, I am so against having the bladder removed very difficult....