Bladder cancer

A place for people affected by bladder cancer to support one another, ask questions, and share their experiences.

Bladder cancer results

Mocking bird
Posted by

Hi All, I'm new here , I had a TURBT early May and have now had the results from the consultant,  T2 grade 3. I've still to have a CT scan before they give the final staging.

 A Radical cystectomy is what's recommended and because the tumour is at the bottom of the bladder a neo bladder is not possible. 

Need to do my research on RC.

He also said I could get chemo therapy before the surgery. 

It's been very difficult telling my family this as I'm sure you all know this too well.

Thanks in advance. 

Mocking bird 
rily
Posted by

Hello and welcome to the community. CT scans are standard in these cases, just to rule anything else out and give them a bigger picture. I had chemo followed by chemoradiotherapy as I wanted to keep my bladder. We have members here who went the removal route and I am sure someone will be along to share their experiences of a cystectomy if that is the way you go. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?

Mocking bird
Posted by

Thank you Riley, 

The consultant didn't offer any other alternative to surgery,  maybe because its aggressive. 

Mocking bird 
rily
Posted by

Hi . Mine was also aggressive and T3. That was over 5 years ago and I have a normal functioning bladder. Just something to consider. Best wishes

Best wishes to All,   rily.  What is a Community Champion ?

Crustybladder
Posted by

Hello Mockingbird

I too was G3 T2 and my cancer was at the neck of my bladder. I had surgery in Jan 17 which worked for me and I have no regrets. RC is the gold standard treatment but it's a very personal choice between that and radiotherapy.

I had 3 months of chemo, cisplatin and gemcitabine pior to surgery. I've collated some information about what to expect if you choose the chemo/RC/stoma route that I'll be happy to share with you once you've got your head around your diagnosis.

Meanwhile, don't speculate about the future and avoid Dr Google. All the info you need is here amongst the BC forumites.

CB 

What if the Hokey Cokey IS what it's all about?

Mocking bird
Posted by

Thank you CB, 

It does help to learn about other people's experiences much better than Google.

The nurse called me to introduce herself and offer any help, which is nice. 

I'll be in touch for more info about the surgery. 

Much appreciated 

Mocking bird 
Tess50
Posted by

Sorry to hear of your diagnosis Mocking Bird - the support and info here is great so keep strong and whatever route you take will be right for you 

Tess 
Crustybladder
Posted by

I found it helpful to build a file of documents, diagnosis reports, appointment letters and I kept a diary of events during the period of diagnosis to the end of the main treatment. I regarded it as a project and learned quickly that we have to manage this health project rather than defer to the NHS system.

NHS admin is variable so be prepared to chase appointments and always ask for copies of letters to your GP. Nationally, waiting times are missing the imposed target deadlines so you may have to be a bit of a charming nuisance with the admin folk.

Keep us posted.

CB

What if the Hokey Cokey IS what it's all about?

Catcatcat
Posted by

Sorry to see you here in this group.  However, you have found an amazing source of help and support - welcome! 

Xx

Keep positive, keep fighting, but it's also ok to have days when you are not ok x
Lugsy
Posted by

Hi Mocking bird sorry to hear your news. I had a RC in February but the neo bladder route but if I can answer any questions you have , just shout.

I fortunately didn't need any chemotherapy before or after so can't offer advice for that but my RC was very successful removing all my cancer.

I hope the CT scan results are positive. Not at all easy telling your family but it's amazing the difference their support makes.