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Here we go - CIS & BCG

10 months 3 days ago #58812 by Regor
Haven't checked in for a while, so thought I'd catch all up with my BCG experiences -

I'm on Re-Induction, after a repeat appearance of CIS. I started treatments on Dec 13, 2019.
BCG #1 of 6 (#10 total) - No side affected other than the normal fatigue. For me, the fatigue comes and goes, I normally am fully functional, doing chores, going to work, but I do tire easy and typically need a morning and/or afternoon nap.
BCG #2 of 6 (#11 total) - Besides the fatigue listed above, a slight fever of 99.2 on the day after treatment. Tylenol lowers it, but it stuck with me for a day and a half.
BCG #3 of 6 (#12 total) - Had treatment this morning, 2 hours treatment over, just chugging my water now.

WATER IS KEY !! I can tell if I'm not drinking enough on the day of treatment if the urgency and irritation is frequent. If I drink more water, it cleanses out my bladder and lessens the feeling of urgency.

Hope this helps someone out there going through the same issues.
Happy Holidays!!

TURBT Jan 2019; Diag: CIS
Induction BCG (Mar 19) /Maint BCG (Aug 19)
TURBT Nov 2019; Diag: CIS
Repeat Induction BCG - Jan 2020 Complete
The following user(s) said Thank You: Knifedealer

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11 months 3 weeks ago #58599 by Alan
Thanks for the update. You WILL beat this!

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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11 months 3 weeks ago #58598 by Regor
Pathology report has come back already (just 3 days) and the Surgeon called tonight to report back to me.

During surgery she took two biopsies. One has come back as just inflammation, one has come back as Carcinoma in situ (CIS) again (high grade cancer). The situation is - we don’t know if the CIS is new that has spread or some that wasn’t seen before with the naked eye.

So the plan is: Start back over. Repeat Induction phase of BCG - this means 6 weeks of once a week treatments, starting in 4 weeks, so I’m targeting Friday 13 December to start. Then a Cystoscopy in 3 months to examine again (scope in bladder), and go from there.

Keeping spirits high.

TURBT Jan 2019; Diag: CIS
Induction BCG (Mar 19) /Maint BCG (Aug 19)
TURBT Nov 2019; Diag: CIS
Repeat Induction BCG - Jan 2020 Complete

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11 months 3 weeks ago #58570 by Regor
Going in for TURBT #2 this afternoon. The Fasting is the worst. I typically am up at 5:00AM, eating breakfast and off to work, so with a 4pm surgery and no eating today, I'M HUNGRY :P

Having been through the process before, I know most answers, what the outcomes may be, and how LONG the wait is for Pathology.

For any of you multi-TURBT members, were there any different questions that I may have missed? My only pre-op with my surgeon is right before surgery, due to the quick turn to get me in. See below:
  • You will go down and get muscle in the biopsy?
    Will you take any sporadic biopsies? Just because we don’t see any evidence on the scope, could there be cells, especially if you keep following from scar tissue, to new area, and parallel to it.

    Once Pathology report comes in, please call me, and if I don’t answer phone, please leave message, and if possible email Pathology report via KP.org
    In message, include suggested way forward i.e. Continue BCG Maintenance or repeat BCG Induction, or try a different drug or method.

    If this comes back as CIS (or other Cancer) would this be considered BCG failure and require a different approach?

TURBT Jan 2019; Diag: CIS
Induction BCG (Mar 19) /Maint BCG (Aug 19)
TURBT Nov 2019; Diag: CIS
Repeat Induction BCG - Jan 2020 Complete

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1 year 11 hours ago #58544 by Regor
Wow, what a nice break with no treatments, no catheters, and got some of my life back with friends and family.

Another Chapter -
Today was my repeat Cystoscopy after 
  • TURBT in January 2019
    Induction BCG April 2019
    Cystoscopy May 2019 - All Clear
    Maintenance BCG - September 2019

Today: Cystoscopy - a new area has been discovered that is raising concern by my Oncologist.

The concern is: The area she saw today is adjacent to the area she operated on in January (next to the scar tissue). So it would lead you to think the Cancer is moving along the Bladder from its origin.

Surgery next Tuesday to remove the area the Dr. is concerned about and send the biopsy to pathology. Treatment after that will be dependant on the pathology report, and means I may start Induction BCG over again, or go straight to Maintenance.

Spirits are still high, as I continue to catch it early !!

TURBT Jan 2019; Diag: CIS
Induction BCG (Mar 19) /Maint BCG (Aug 19)
TURBT Nov 2019; Diag: CIS
Repeat Induction BCG - Jan 2020 Complete

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1 year 1 month ago #58299 by Regor
3rd of 3 Maintenance BCG treatments complete !!
I really felt a load of relief come off my shoulders, to walk out of the Doctors office and know I have no treatments for another 3 months.

Cystography in appx 2 months, but all in all, no catheters for a long time !!!

TURBT Jan 2019; Diag: CIS
Induction BCG (Mar 19) /Maint BCG (Aug 19)
TURBT Nov 2019; Diag: CIS
Repeat Induction BCG - Jan 2020 Complete

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