Next consultation wait

Usually with the NHS no news or delayed news is better news or good news. 

If it's bad news you will almost certainly know sooner rather then later. That is is my experience anyway and what I was told when I questioned why I hadn't heard anything from scans etc I'd had, no results at all. 

So try not to dwell too much worrying about the what it's until you have some solid evidence to go on, once you know what your sealing with and the netting is out the way at least you can have a clearer picture going forward. 

The waiting is never easy at all so easier said than done, but try to do stuff to take your mind off things as worrying only tens to make things worse in my opinion. 

Good luck with the appointment and I hope it goes better than you expect. 

Chin up and try not to overthink things, overthinking is bad and in fact sometimes thinking at all is bad. 

Hi Golfmadde1293 . There is a lot of waiting in this game. You can never read anything in to the timings of meetings. Have you had a TURBT procedure yet ? Best wishes.

Not had the TURBT they can’t reach the tumour as it’s in a diverticulitis in my bladder, so just a waiting game, thanks for the replies, trying not too think is usually easy for me lol got a little harder these last few days 

Hi Golf, what you have posted sounds normal, i think what they do is collect all the information on you regarding scans ect, then discuss you in a meeting and collate a treatment plan for you…they want to have as much information as possible before contacting you…try not to read anything into how long before they contact you…

a couple of things that you are gonna think is mad…both of which I still struggle with..

1. Don’t worry and stress yourself about this…it’s not gonna help you…

2. dont put your life on hold waiting for results, appointments ect….

your probably thinking WTF is this bloke on about. 

just for the record, im 18 months into my journey and am just taking my own advice….

The mental side of this is horrible, I hope you have a good support nerwork. 
ask anything on here and someone will always try and respond…

no such thing as a silly question…

Nigel 

The waiting is horrible especially at the beginning of the diagnosis.If you can try and find something to distract yourself it will help.There will still be waiting in the future but things become easier once you know about treatment.Best wishes Jane 

Thanks Nigel appreciate the advice, I’m going away to Spain (hopefully) soon just needed some clarity before I went away, getting insurance when you haven’t got a full diagnosis isn’t possible, so abit stuck at moment, but totally agree I’m just trying to crack on, this site is brilliant, people seem really helpful , and seem to deal in the real world not like some social media I’ve been reading, thanks again

Golf, you have just reminded me…

3. stay away from the internet….so much misinformation…

enjoy your break to Spain…and remember, everyone on here has been in your position..

Nigel 

Dear Golf,

I'm sorry about your diagnosis and having to have a scan. I've been at this since August 2022 so have definitely 'got the t-shirt' (and no longer have a bladder). 

First thing to say is that worry doesn't cure anything, especially cancer. Easy to say, and hard to do but that's how I've tried to live since starting this journey.

Second thing is that CT scans and MRIs are very slow to get results from because they do lots of them but the radiologists who have to do the reviews and then report on them are in short supply.

I had a CT scan this week (before a discussion with my oncologist that was booked 6 months ago - I have reached the stage of being reviewed every six months now) and that meeting is not until late October to make sure the scan report will be available then - allowing up to 6 weeks is normal these days, I'm afraid. 

Actually, I once had a CT for something else that was urgent ie potentially immediately threatening and that was reported on before I left the building so it can happen very quickly if needed. 

I think your timetable is fairly quick after a scan and there is also bound to be a MDT before you talk to your specialist (multidisciplinary meeting  where all the relevant medics get together to discuss all current patients going through the bladder cancer system) as well. In my hospital they are on Fridays  each week. 

I can confirm that if the scan or meeting throws up anything that  needs to be looked at before your appointment someone will ring you. That happened to me once. But at the stage you are at, they probably won't need to do that.

If you look at things from the medical point of view, you're in the system and progressing through the various stages in the normal way. Of course from our side  it's all new, strange and people keep telling us frightening things. 

It does get a bit easier once you know what to expect and when.

Good luck.

Latestart

Hi Golfmadde1293.I am wandering if your bladder tumour is located within a diverticulum ( a pouch that is attached to the bladder with a very thin wall). ?

It is unfortunately they can’t reach it from the inside