Absolutely no idea where i am at.

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.

 

  • A very warm welcome to the forum Chefski although I'm really sorry to read about everything you've been through and where you find yourself now.

    I can't begin to imagine how frustrating this must be and it's completely understandable, and natural, to be feeling angry about this.

    Hopefully some of our bladder cancer members will share their experiences and advice with you soon but if you'd like to talk any of this through with one of our cancer nurses, you can contact them on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. You can also make a post in their section of the forum just here.

    I really do hope you're able to get some answers and clarification on your diagnosis soon and wish you all the very best with your treatment.

    Kind regards,

    Steph, Cancer Chat Moderator