Hi Colleen,

Urologist appointment on Thursday at 11:30 am. Won't know the treatment regime until then. Annoying to wait 2 weeks to find out. Oncologist said in our meeting 2 weeks ago that it is not muscle invasive (I added - "YET") and is treatable. She is thinking the urologist will offer BCG treatment. Immunotherapy with Nivolumab will continue every 4 weeks. Yesterday's CT scan was "status quo", but then the end of January CT scan was the same with bladder tumor barely a month later.

I have done some research and will ask Urologist if the treatment plan is for Primary Bladder cancer or if it is for UTUC Intravesical Recurrence (UTUC IVR) in the bladder. According to several journals UTUC IVR in the bladder is different from primary Bladder cancer and standard BCG treatment is not as effective at stopping it. "Presence of NMIBC after treatment for UTUC has a worse outcome for patients compared with primary NMIBC. More aggressive treatments for bladder tumor recurrence should be considered" .

Based on statistics of several retrospective reviews, I am on target for UTUC recurrence in the bladder (min. 7 months after RNU). There is a 50% chance that NMIBC will recur within 3 years of BCG treatment, a 12% chance of radical cystectomy and a 24% chance that other metastatic cancers will occur.

So far my cancer has consistently been on the bad side of "chance". 1 chance in 50,000 of getting it. My UTUC had squamous differentiation (13% chance of that occuring). So being on the "good" side of the 47% end point for cancer specific survival in 5 yrs (now 3.5 yrs) is highly unlikely.

Since UTUC and the recurrence in other areas has been difficult to study as there are not enough victims for studies and they are diagnosed late (Stage 4 for me), the effect of any treatments such as the cisplatin/gemcitabin before surgery, immunotherapy after surgery and now BCG is unknown.

I am taking this one day at a time (with bouts of crying) hoping to reach my 65th Retirement age in 2026. Not quite following the activities in Tim McGraw song "Live like you were dying", (no way, no how, am I jumping out of a plane!) but continuing my normal activities. It is all that I can do.

Thank-you for caring.