Cystoscopy - post initial BCG treatment

7 years 1 month ago - 7 years 1 month ago #52825 by Alan
Replied by Alan on topic Cystoscopy - post initial BCG treatment
Dave,

Re-reading your thread something just doesn't ring good with your URO. First he wanted to wait 6 months, which is simply too long. Now at 3 months, while it is better when the "normal" standard is around 6 weeks I am seeing red flags. How much bladder cancer does this guy see? Too many practices are doing mostly prostate or other issues. While none of us are doctors IF, the BCG hasn't done it's job you want to be aggressive either with another round or looking into a cystectomy. MD Anderson is the "gold" standard and as inconvenient as it is, that is my backup. You really should consider them as you can self refer. My URO, J. Mansell Harris MD, that started for me almost 9 years ago in New Braunfels is wonderful. He has since moved to Scott & White in Marble Falls, TX which is fairly close to Austin might be an option unless he has gone into administration which is what he thought he might end up doing.

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.
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7 years 1 month ago #52806 by dtat60
Replied by dtat60 on topic Cystoscopy - post initial BCG treatment
Well, I called the MA and asked her to ask my Dr. if he would mind reviewing my case in light of the fact that I have both CIS and TCC HG and would like to be as aggressive as possible in my treatment. I got a call today from the scheduler and was asked if I could make a first week of may appointment in light of my concerns.

Admittedly it is a bit frustrating not to be able to talk to the Dr. myself but their procedure is to leave a message or talk to the Dr's assistant, etc.

Although this makes the timeline now just shy of 3 months I think that will be OK?? I guess I'm being a pest but I figure it's my life and I need to be as proactive as possible. However, I am thankful that I am able to get treated in Austin rather than having to go to MD Anderson which is a 3 hr. drive. Considering the fact my doctor has seemed to follow the same protocol as everyone else unless I am faced with having to have a RC in the future to me that seems reasonable. I hope I'm not just taking the easy way out for convenience sake but it is more easier for me and my family.

Peace and Love, Dave

08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG

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7 years 1 month ago #52785 by Jfoutz
Replied by Jfoutz on topic Cystoscopy - post initial BCG treatment
I went 6 weeks after my BCG treatments.. all was clear, but I had some side effects from BCG so he suspended the maintenance for 3 months. When I went back I had more growths, so I'm sorry I didn't get to the maintenance. I had those growths removed this past Thursday so I hope he will start me back on BCG when I heal up. But I think it is normal for 3 months, not 6 months.

Hematuria 4/2016
TURBT 5/2016
BCGx6 7/2016
Reoccurrence & TURBT 2/2017
BCGx6 4/2017
BCGx3 7/2017
TURBT 10/2017
Gemcitabine X6 12/2017
Cytology negative 4/2018
Cytology negative 8/2018
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7 years 1 month ago #52781 by LillianG
Replied by LillianG on topic Cystoscopy - post initial BCG treatment
Dave, just as an FYI - my cystoscopes have been every 3 months, and this works out to be about 8 weeks after my treatments. Waiting 6 months seems a bit risky to me. I'm now at the stage where my maintenance treatments are every 6 months, but I still get cystoscopes every 3 months. I suggest that you discuss this with your doctor.

I hope this helps.

Take care,
Lilliang

5/2015 4x2cm HG Ta Papillary TCC; 6 initial BCG followed by 3 sets of BCG maintenance. Ten scopes - all NED. Now at scope 1x year.
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7 years 1 month ago - 7 years 1 month ago #52779 by Alan
Replied by Alan on topic Cystoscopy - post initial BCG treatment
Dave,

As you have read there are many different schedules or protocols. However, waiting until August is simply too long between the next scope. That is almost 6 months! The usual is 6 weeks, some sooner like 4 weeks and a few suggest later, maybe 8 weeks after. You want to see first if the BCG is working in clearing out any tumors and second if they are still there you want to attack further. Sometimes the bladder is so irritated that the bladder will still look like CIS so just a word of caution there.

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.
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7 years 1 month ago #52777 by dtat60
I finished my initial 6th of 6 BCG treatments today. I have had no or very little side effects for the most part but I did notice a little bleeding today after holding for 2.5 hours. Glad to have finished the treatments with ease.

I have read through the forum and various sites concerning the cystoscopy after the BCG treatments and noticed different post BCG schedules. Some had one 6 weeks post BCG and others 3-4 months.

My BCG treatments were performed by a Urology Medical Assistant and I haven't actually spoken to the Dr. since my TURBT followup. The MA said I would need to schedule a cystoscopy in 6 months. I questioned her because I remembered a much shorter time from reading the forum. She said that my bladder would need to heal before looking in order to have a good look. So I have an appointment in early Aug.

I have no problem have a 6 month wait :P but I am concerned if it hasn't worked this might be too long?

Any opinions? Should I ask for an earlier appointment or just relax and enjoy the time off?

Peace and Love, Dave

08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG

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