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.
So after my meeting last Tuesday things were discussed the oncologist said they had 3 MDT meetings and i was discussed at all 3. The decision to not do surgery was not an easy decision and came down to the fact they believe the probability of removing the kidney and the lymph node in question that is near the aorta would be incredibly low chance of cure.
They want to do immunotherapy and then if the lymph node completely dissapears then they will look at surgery again. Not giving up hope they just feel that this is the best treatment at this stage.
On a positive note i am going away on my Holiday to Disneyworld with my family and plan on having the best time ever going for 18 nights eating in lots of nice restaurants and seeing my kids beaming faces is what i need right now 
Then when im back the immunotherapy will start.
See you all in 3 weeks
