I had a cystoscopy 7 weeks ago and then a TURBT 4 weeks ago, spending 3 nights in hospital.
I had found out quite a lot about possible outcomes and treatments - including from 3 friends who are doctors.
Last Friday - six days ago - I went to an appointment with the Urology consultant nurse.
Not knowing the outcome of my own situation for weeks was tough, so at least I was looking forward to some certain knowledge. However I was not expecting results to be so hard.
My tumour was high-risk, the cancer had invaded the muscle and I will have to have a full cystectomy, preceded by a 9-week programme of chemotherapy. At the end of this whole process, I will have a stoma and a urostomy bag for the rest of my life.
This news was such a blow and I am slowly trying to come to terms with it all.
(The incidental "good" news is that they will also remove my prostate and I won't have to worry about the aggressive prostate cancer (which was treated 8 years ago with maximum radiotherapy and hormone therapy). Recently, my PSA has been "ticking up". although the urology team have not been too concerned so far.)
Tomorrow, I have an appointment to see the consultant oncologist to give me more details and to set up the chemotherapy.
I feel quite ignorant about the specifics and, naturally, I am daunted at the prospect of chemo, then surgery and having to adapt to life without a bladder.
That's probably more than enough to post just now.
Hi PEB and welcome to the group and we know how daunting the prospect of treatment can be but be aware treatment can be successful. When you see your oncologist they may offer the alternative of radiotherapy which is the option I chose for MIBC. Many here have had cystectomy and will be able to help if you go that way. Once you find out your planned treatment there will be lots of help and support to help you through it. Best wishes.
