Just diagnosed...

Mpb1963

Hi.....its scary when you hear that it is the most recurrent of the cancers but reassuring to hear about the treatments out there.

This community has been a great help to relieve my anxieties since diagnosis. 

Sending love

Clare

I had some weird login issues. So had to re register. Same email but had to use a different username ... (now mpb1963 instead of just mpb)

Hi Rily,

Ah... The mind games.... 

I had a freighting thought this night. I have had lower back pain for years. Muscular certainly. And I have it currently, although the back feels more tense. This can be caused by the BC, if it has invaded the muscles and maybe further. I see you had muscle invasive BC. Did you also have back pain? Did you do a CT scan before the cystoscopy? If yes, did this show anything further out the bladder? My consultant said that the CT scan"looks clear"... 

I just wish I could sleep, at least until the result. If I am in this state for 3-4 weeks I will also need a psychiatric treatment....

Thanks for your help!

Marco

mpb1963. Morning Marco. You're right, it does mess with your head. I had some dark thoughts in the early days and the folks on here helped me out. I did have back pain, but this is a fairly common symptom for many and is not a real indication of how things have progressed. I had a CT scan, which is standard procedure. A general body scan, and this is precautionary to rule other things out. Following my first TURBT, I had an MRI scan. This is a far more detailed scan focused on the bladder area. Once you get on the treatment path, your attitude tends to change as you know something positive is happening and you have something to focus on. I notice from your revised first post that you like to keep fit. Being fit will help with any treatment and recovery. Best wishes.

I had the same - stiff back, lower back really rigid and actually got the  shakes, lost  weight due to loss of appetite, etc.  I was a wreck but it was all down to anxiety and lack of sleep.  I was quite surprised as I consider myself very rational but stress can really impact you physically. It is easy to attribute every ache and pain to a spread of the cancer but that is probably unlikely on balance, especially with the CT looking clear. 

BTW, meant to say in my response above, I was back running 10 days after my TURBT (admittedly only a little trot round the field)  - and as mentioned by others, it is very important to follow the guidance on rest, listen to your body and remember you have a wound healing inside your bladder but I hope that is encouraging in terms of how well and quickly most recover from TURBT.  It does get easier. I think the worst time for me was the first few weeks waiting for the procedure.

Blue

Hi mpb1963

It's natural to think every ache and pain is now the cancer, my GP has been a great support to me especially in the time leading up to the TURBT. 

Have you considered reaching out to the GP? I was given something to help me sleep on those nights I lie awake panicking that I had cancer inside me and thinking it was spreading while I was waiting. 

Like others have said, it is very unlikely to be spreading but all rational thoughts leave you in the middle of the night in the time leading up to the TURBT. 

Sending love

Clare

Just a tip for people going forward. Whenever you have consultation, always ask to be copied in on the notes. Your consultant should keep your GP informed and you are entitled to be copied in. It is so easy to forget what you have been told as you can be overwhelmed with info. So much easier to understand when you have it in black and white. I have records of all my meetings and treatment. Good to refer back to. Best wishes.

Hi Marco I agree with all the comments from others .. the waiting for results is really terrible ..I lost stone and half because the anxiety caused my appetite to go and every ache and pain I had sent my thoughts into turmoil .. I prayed that this horrible feeling would go and help me deal with the anxiety I felt ... my diagnosis was cisbladder cancer which is a high grade but apparently is non invasive.. I have had 6 bcg treatments and go in to have my cystoscopy on July 13th to see how things are ... I try my best not to be down about it and go out and about as much as I can ..chatting to others as I'm out helps me as you soon realise so many others are living with problems in their lives too (welsh people are open books lol) try to take one day at a time and things will work out for you .. the anxiety is awful and I really feel for you hopefully it will pass and you will  deal with things better as we go on this journey we never wanted or imagined we would have to take xx take care love Tina xx 

Hi Marco

It's all so overwhelming I know but you are in good hands. The waiting is horrible. I am awaiting the results of my bi-annual scan. This forum is fabulous and we are all here for you

Love Inanna x 

This forum is indeed fabulous! I have moments of optimism, shortly followed by moments of despair. A really scary rollercoaster... But I then read all your messages again and that gives me the next moment of optimism .. so thanks! You are invaluable! And good luck with your scan! Do let us know how it went!

Love back to you

Marco