5 months 3 days ago - 5 months 3 days ago#58994by Alan
Welcome. !st, none of us are doctors just people that have been there and done that so take it for what it is worth. If I understand correctly Dan has had 2 courses of BCG? With biopsies not showing tumors and a cytology showing malignant cells. I would rely heavier on the biopsies pointing to no cancer. Cytology is notorious for false positives. It even happened to me.
A CT Scan would look at the whole urinary tract to rule out other involvement since he has had prostate cancer. The only downside CT scans do involve a SMALL risk either in the contrast dye or radiation (which has never been proven yea or nay but many questions). This may become more important if cytology keeps showing atypical cells.
On the BCG. He probably has had some good value in it with 2 courses and if the bladder is beat up over this it may be time to discontinue. There is no "exact" protocol done by everyone. My URO did 6 on, 6 weeks off then 6 and that was it. Last item in BCG. Lower dosages have also been chosen at 1/2, 1/4 even 1/10th if side effects are too much and you want to continue.
I have written a book and hope I haven't made this more confusing. I have learned asking questions of your team is the best answer. Last item. There is a good chance that TA "tiny" tumor was eradicated in the original TURB and is gone forever. Keep those 3 month or followups. the scopes are a real key.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Hello- this is my first time posting.
My spouse “Dan” has recently had CIS a currently presumed clear. His urologist (who is well respected and a professor in this city’s medical center- has treated many cases) does not like to give maintenance BCG but says he will do it if we insist. He believes the risks are significant. His school of thought came from his schooling and years of work with Dr. Harry Herr who doesn’t give maintenance therapy.
We got a second opinion from another urologist in the city. He would be giving Maintenance therapy every 3 months following a cysto according to the current standard of care.
Here is Dan’s history:
3/2016: Ta “tiny” high grade badder tumor found incidentally on an MRI being done to biopsy his Prostate for cancer.
4/2016: TURBT 6/2106: BCG Induction
12/19/16 Radical Prostatectomy (Gleason 7) - inflammation from BCG found in prostate tissue
4/2018 having urgency and pain intermittently with clear urine cytology and urinalysis
11/2018 Cysto- no biopsy done because "bladder looked normal”. Urine cytology was showing Malignant cells 10/ 2018.
11/18 - 4/19: continued issues with urgency and pain.
4/2109 Bladder biopsy - CIS 6/2019 BCG Induction again
8/2109 Biopsy done : clear
11/2019 Cysto- bladder looked OK Urine cytology clear
1//30/2019 Met with doctor to discuss Maintenance therapy. Urine cytology pending, fingers crossed. Cysto next month. We are 8 months out from Induction and he feels fine.
Has anyone out there chosen not to get BCG and what is your outcome ?
Anyone else with a doctor who does not believe in maintenance therapy?
Any words of wisdom here welcome!