OK firstly hello everyone
I will try and keep thi short(ish)
I am a 50 year old male and i was diagnosed with high grade superficial bladder cancer in my urethra last June/July. I was told they would do a cystectomy but then they did an MRI and they could see no signs so decided to refer me to another hospital (I had many, many delays in treatment and had around 3/4 cystoscopies, each time dealing with what was there and then they found CIS in my right ureter.
The plan changed again to removing my kidney & ureter and treating bladder with BCG and urethra with mytomyacin gel.
I was then seen at the new hospital and they took over my care but wanted to do their own tests. They found no signs of cancer with a cystoscopy that was November.
They decided that because of previous findings that yes they would remove kidney / ureter. This was scheduled for Febuary.
Whilst doing a cystoscopy before the actual surgery they found it had come back in the urethra, ureter and had appeared now in my bladder so they abandoned surgery to wait for biopsy results.
Once again plan was decided to try the surgery again but they order a PET-CT scan as one of my lymph nodes was on the borderline.
Then things seem to have just gone crazy, i saw the consultant again who said unfortunately the lymph node was positive i believe he said near the aorta. So they will need to refer me to oncologist for Chemo and if the cancer responds then revisiting the csystecomy.
So i apologise for the long winded post but i have no idea what i am dealing with here and reading only makes things worse.
Is it possible that if it has spread from my ureter to the lymph node near aorta that this can be cured by chemo or removal?
or am i now at stage 4 and palliative care, i just dont know as i cant seem to piece everythingg together.
I just feel so angry that they were talking about removing the bladder etc in August and now i feel it is too late
Anyone with experience of bladder cancer spread to lymph nodes if you have any advice you can share it would be appreciated.
Hi chefski . Some good news in a way regarding the nodes. I was told I had thickening of the bladder wall, but that was years ago and so far no problems. I hope all goes well with your cystoscopy next week. Keeping things crossed for you. Keep us posted. Best wishes.
Hi chefski . These red patches are common and usually caused by inflammation. Not surprising after what the bladder has been through. The problem is new recurrences look the same way which is why they biopsy to make sure. I have had several false alarms over the years. Hopefully all turns out well when you get your results. Best wishes.
Well the ups and downs continue :) heard from oncologist today not the best news, they have results from biopsies and the bladder etc were all still superficial and not MI so thats good news, the bad news because its in the urethra, bladder and ureter they have decide that surgery is not on the cards for me as it would be too much (we were hoping for just kidney and ureter removal).
So we are back on the clinical trial route of immunotherapy and something else.
Very deflated today feels like a massive blow and i dont want to take it as giving up but fear that unless some more good news comes along things are on a bit of a downer.
Will pick myself up tomorrow and try and get my head round this 
