Start of treatment

Hi LoobylouStaffs4fd2f6 and welcome to the group. Sorry to hear you have had a tumour identified. I am sure you will get lots of support here going forward. Early days for you yet and you should know more when the path results come back. Not sure how the private sector works, but in the NHS there would usually be a follow up TURBT along with CT and MRI scans. As well as giving a bigger picture of what they are dealing with, the scans check to see if anything else is going on. These follow ups give a more accurate diagnosis. There would then be a multi disciplinary team meeting (MDT) with professionals of different disciplines to discuss your case and plan a way forward. My tumour was muscle invasive and I went with the chemo followed by chemoradiation route. Happy to help with any questions about that, but like I say, early days for you. Best wishes.

Sorry to hear that.

You will know more at your follow up appointment try not to worry yourself about what if's, until they get the path lab results back you will be working on possibilities rather than accurate information.

Once the histology is done you will have a clearer picture of grading etc.

It's a roller coaster journey for many of us in one form or another.

Thanks Rily, I’m going to ask them about an MRI. I haven’t much faith in the CT after the tumour wasn’t identified through this last time! 
Did your consultant support you to have an alternative to bladder removal? It feels like most people with muscle invasive bladder cancer have their bladder removed. I’m wondering the extent to which it’s a ‘default’. 

Im going to ask about the prognosis. I really want to keep my bladder if I can but don’t want to play with fire. 

Also, was having radiology and chemo together particularly hard on your body? 

thanks 

Lorna 

Thanks Simon, yes this wait is excruciating.  My cousin who survived breast cancer says cancer is the rollercoaster ride no one wants to be on. 
take care, Lorna 

Hi Lorna. My oncologist was an advocate of bladder preservation where possible and said there is no evidence to show one method is better than the other for muscle invasive BC. CT scans are not ideal for seeing inside the bladder. They are used to rule anything else out elsewhere. My own treatment was long and tiring but I tolerated it well with no nasty side effects to talk about. Over ten years now and so far so good. Best wishes.

Hi Lorna,Welcome to the group.Once all your results are in you will have a better idea of what treatment is available.Type of cancer as well as spread will influence whether bladder removal is necessary.The waiting is horrible especially at the start.It usually gets easier once you know what treatment you will be getting.I hope you find the group helpful and supportive.Love Jane 

Thanks so much for this info. Such a help. 

Thanks Jane. I’m trying to get as much info without doom scrolling

It can be overwhelming at the start.At least in this group you are getting information from people who have experienced the treatments.A few of us have undergone bladder removal and are doing well.It’s best to avoid Dr Google.Love Jane