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Just back from cysto…
Just back from my uro and first post-BCG cysto.
Cysto showed two small red areas plus significant necrosis of prior (small single tumor) scraped cancer site. Any/all could be either due to BCG treatment (Doc told me more likely) or cancer (less likely) so am being scheduled for another biopsy TURBT; date unknown within next few weeks. If not cancer, will continue BCG maintenance at same dosage (I tolerated it well) for three weeks and another cysto in 3 months. If cancer, he recommends RC based on decreasing survival percentages w/o RC. Trying to stay positive but expected answer today, not “we need to do more tests”. Also need to try not to think about RC. So far have avoided and will still avoid) reading the “invasive” board and learning about RCs.
[insert curse words of choice].
David Age 59 Dx May 2008 TURBT May 2008 T1G3N0M0 TURBT + MMC June 2008 BCG 6 treatments July – August 2008
Male Dx T1G3 5/08 @ Age 59. TURBT 5/08; TURBT+40 mg MMC 6/08; BCG (6) 7/08-8/08; Cysto & TURBT 9/08; BCG Maint(3) 10/08, 3/09; 7/09; 11/09; 5/10; & 1/11. Clean cystos 2/09, 9/09, 3/10, & 10/10.13 Replies-
David,
I am so happy all ended well!! Enjoy your Holiday………..
Nix
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07
David,
What a beautiful post. I am so heart glad for you.
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
David,
I am so glad to hear your good news – what a relief! Especially at this very special time of year.
My uro has spaced my FISH test away from the BCG – we do the cysto and FISH a week or so before the BCG instead of doing each a week or two weeks after. I have gotten good results this way and the BCG inflames the bladder and can mess up the FISH.
I hope your future results are just as good as this.
Ross
Ross M
TaG1 March 06
Recurrence Jan 07
BCG Maintenance after 6 week treatment
My doc called this afternoon with the great news that the path results from last Friday’s TURBT/biopsies all came back negative, as did all the other labs (FISH, cytology).
What a relief! Now it’s on to the 3 BCG maintenance in November.
I am Jewish and tomorrow night starts the holiest day of the year for us – Yom Kippur. Last week was the new year – Rosh Hashona, and the ten days between are called the Days of Awe. When one reflects on one’s life; asks for forgiveness from any individuals we may have slighted or hurt in the past year and generally contemplate life. One of the key prayers on Yom Kippur is “May We Be Inscribed (and Sealed) in the Book of Life” for the coming year.
I wish the same for all of you out there in BC land. May you and yours have a healthy, happy and sweet year. I’m going to try my best.
David
Male Dx T1G3 5/08 @ Age 59. TURBT 5/08; TURBT+40 mg MMC 6/08; BCG (6) 7/08-8/08; Cysto & TURBT 9/08; BCG Maint(3) 10/08, 3/09; 7/09; 11/09; 5/10; & 1/11. Clean cystos 2/09, 9/09, 3/10, & 10/10.
I guess I can understand that – from what I have read the one study (small pop) showed 21% false positives and 1% false negatives. But it is one additional piece of info.
Male Dx T1G3 5/08 @ Age 59. TURBT 5/08; TURBT+40 mg MMC 6/08; BCG (6) 7/08-8/08; Cysto & TURBT 9/08; BCG Maint(3) 10/08, 3/09; 7/09; 11/09; 5/10; & 1/11. Clean cystos 2/09, 9/09, 3/10, & 10/10.
Dib,
My uro won’t even do a FISH because of the high false positives. His concern is doing the scope thoroughly with cytology, which makes sense.
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.
Ross and others:
Your words and experiences have helped. Especially about your having a positive FISH test. I get my FISH results tomorrow and researched and found that one study found 21% false positives from FISH!
I had my post-cysto biopsy/TURBT on Friday and am now with that wonderful device, the catheter. No biggie. But waiting for the path results that will take at least another week to get back…
Male Dx T1G3 5/08 @ Age 59. TURBT 5/08; TURBT+40 mg MMC 6/08; BCG (6) 7/08-8/08; Cysto & TURBT 9/08; BCG Maint(3) 10/08, 3/09; 7/09; 11/09; 5/10; & 1/11. Clean cystos 2/09, 9/09, 3/10, & 10/10.
David,
I went through a similar situation after BCG. My first cysto after 6 weeks of BCG was done about 2 weeks after finishing the last treatment. The tumor sites were red and had some calcification. I also had a positive FISH test at the time, so went through the biopsies and they were negative. I even had the ureters and prostate done (several procedures) because my uro was concerned about the positive FISH. I am fortunate to have family that lives in Phoenix and my doctor wanted me to be seen for a second opinion concerning the BCG protocol – I went to see Dr. Lamm and the red areas and positive FISH did not seem to surprise him (he did have the benefit of knowing my biopsy results). However, I am glad that my doctor was so thorough even though I went through a lot.
So far I have been tumor free for almost 2 years and at my last cysto my doctor said my bladder looked like I never had cancer.
I know this does little to relieve your anxiety, but there seem to be many here with the same experience following BCG. So think positively and keep your spirits up. You have been through the TURBs and you know what to expect from the procedure – just another step in the process of remaining cancer free. I wish you the best and hope your results turn out the same as mine.
Ross
Ross M
TaG1 March 06
Recurrence Jan 07
BCG Maintenance after 6 week treatment
Rosemary:
I had initial TUR in mid may 2008, reTUR plus MMC in mid-June 2008 and started BCG in early July 2008.
I seem to recall that you have been through the BCG and TUR cycle several times.
David
Male Dx T1G3 5/08 @ Age 59. TURBT 5/08; TURBT+40 mg MMC 6/08; BCG (6) 7/08-8/08; Cysto & TURBT 9/08; BCG Maint(3) 10/08, 3/09; 7/09; 11/09; 5/10; & 1/11. Clean cystos 2/09, 9/09, 3/10, & 10/10.
Dave,
I’m curious. How soon after TURB did you begin BCG?
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Best of luck to you Dave. My RC is scheduled for 10/8.
:(Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Bummer, Dave. I guess you’re about 4-6 weeks behind me, so I know how you feel-I think. That rc is just a little too much to think about at this time. We’ll be watching and praying for you. Keep us posted.
Bob
T1 G3
Age 66
DX April 2008
TURB April 2008
Last BCG (#15) April 2009
David,
I know exactly how you feel. My last cysto (early Sept) I had three red spots, had to be biopsied. I really wanted to leave my appointment with a definitive positive answer. Even though my Uro said he thought it was a reaction to the BCG – I still was concerned. After 12 days (the lab was in the middle of moving) I got the good news all was well. Hopefully, yours will also be fine. Stay positive and let us know how everything goes :)
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07Sign In to reply.
