Still waiting.....

Hi Aprildaisies try phoning again now. I often find my CNS gets back to the office for last hour before she goes off duty. It's really unfair to leave you waiting for news all over the weekend. Fingers crossed you get through. xxx

Hi  thanks for the response. 

After leaving several.messages I finally got a call back. 

Sending love 

Hope you got helpful feedback from the MDT? x

I know just what you mean. I also used to get conflicting & short notice info, like no they won't leave a message, to get home from work to find they'd left a message with an appt the following day. 

Try to get outdoors - even in the rain, a walk in fresh air & daylight does wonders for morale. 

Hi. The nurse said she's on leave next week so will make me a consultant appointment when she returns.

Obviously I was not impressed with this so she told me the basics and someone else will call me Monday to explain further. However she said as she's now told me what's what I won't need a constants appointment. 

While I'm grateful for what she told me I would still like the appointment and think I should request it. What do you think? She basically said the cancer is grade 2 and that was all. 

Sending love 

Grade 2 is good, that's 'medium' aggressiveness. Did she give a Stage? Probably Ta or T1, highly unlikely to be muscle invasive. Quite likely that they will offer BCG therapy to deter recurrence, but otherwise strict monitoring will be necessary. Wait to see what you hear on Monday, you may feel that answers all your questions. Hope you can enjoy the w/e better now.

Hi. No, no further information was given. 

Do you think I should request consultant appointment still so I know everything? Hubby says no need but I feel I should know as much as I can.

Sending love

Hi Aprildaisies75,

My cancer was pTAG2, I did see a consultant but that was 4 years ago and COVID wasn’t around. As Teasswill has suggested see what Monday brings, write any questions down you want to ask, I’m sure you could ask for an appointment but if you need any treatment it could delay things. My treatment initially was just another flexible cystoscopy in 3 months. Unfortunately the cancer did reoccur as it can do with non invasive bladder cancer but I’ve been clear now for nearly two years.

Good luck. Luce x

Hi Luce

Thanks for your response 

I was told the consultant appointments are being held over telephone and could be as soon as Tuesday so wouldnt hold up treatment. 

Its just all happened so quickly. From urine sample with GP to TURBT was just three and half weeks so I haven't seen anyone yet and no one returns my calls. I just want to know what I've had and what I'm facing so I can move on and not feel like I have the dark cancer cloud over my head. 

Sorry to hear your cancer returned but great news you've been cancer free for 2 years. 

Sending love. Clare 

Hi Clare,

It’s good that you had your TURBT so soon after referral, very similar to mine. This will be the worst bit, the waiting. I have only seen a consultant twice, apart from before and after each TURBT and  I’ve had four reoccurrences.
Let us know how you get on.

Luce x