Has the doctor re-checked your bladder? I ask that because with high grade tumors a re-TUR is recommended to check for residual tumor and if any is found it is removed before starting BCG. I hate to make you worry but this is a serious diagnosis and you don't want to have progression either before starting BCG (which is only for Ta and T1 tumors) or during treatments.
Do you know if the multi-focal aspect contained CIS (which is often staged at T0)?
Are you going to a good place, an experienced uro?
I hate to make you worry but high grade T1 bladder cancer needs a very experienced doctor.
This is my first post. On 8/9/06, following a cystocopy which became a TUR with fulgration (or whatever that word is , I was diagnosed with, Papillary bladder cancer which was multi-focal. I was told it was between a T0 and T1, Grade 3.
I am a 61 year old male, who is generally in excellent health. I of course have a million questions but I will limit my first post to the one that is worrying me most currently.
Following the surgery I continued to bleed. I went to the emergency room on 5 separate occasions, mostly for bleeding and clots, once for an infection. I was hospitalized and given three units of blood over 4 days on Labor day weekend. One month gone.
The Dr. wanted to wait to start my BCG. The treatments were supposed to begin on or about September 26. For 6 consecutive Tuesdays. Two months down. I showed for the first one, which was cancelled after urine sample showed too much blood and infection. Did two in the following 2 weeks. Common side effects but nothing to really to complain about. Showed for the next one and they couldn't do it when urine sample showed staff infection.
I'm taking Macrobid and I'm supposed to start again this Tuesday, #3. Three months elapsed since surgery.
My worry? It has been almost 3 months and for various reasons, I have only had two treatments for a cancer which was described to me as non-invasive but very aggressive.
From the posts I have read it seems that the experience with BCG is quite variable in terms of how much one receives and over what period of time.
Does anyone have a sense of how long the treatments can be delayed before I need to worry that the cancer is back while no one is looking? I haven't asked the Doctor this question yet because I wasn't worried until they cancelled the last one. I will ask the NP who administers my treatment Tuesday but I was hoping to get some perspective on others experience before I inquire.