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Advice to newly diagnosed

4 years 1 month ago #49286 by MadLove
Dear OE,

The initial and repeat TURBT's for my husband were both positive for CIS. The repeat TURBT is often described in postings as "checking the margins."

Treatment since included a 6 week series of BCG, six week recovery, then a follow-up TURB in the area of the tumors. That pathology report was benign. After another 6 week recovery, he will begin maintenance BCG as a 3 week series will a follow up cystoscopy about three months after that.

Catheters are not his friends either but we remain hopeful that BCG therapy is the means to saving his bladder.

Best wishes on your treatment.

Husband's journey:
01/2015 1st cystoscopy
03&04/2015 TURBTs-CIS
07/2015 Finished BCGx6
08/2015 biopsy-BENIGN!
10/2015 Finished BCGx3
12/2015 Cysto, redness
01/2016 TURBT, Benign
04/2016 Cysto
05/2016 Finished BCGx3
07&11/2016 Cysto's
1/2017 Finished BCGx3
2/2017 Cysto, redness
3/2017 TURBT, Cysto...
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4 years 1 month ago #49284 by bahiw
The cysto and the BCG treatment procedure are about the same in discomfort. They will numb you which helps some.
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4 years 1 month ago #49283 by bahiw
Had very little trouble Can't remember exactly but a few days at most.

Assume you will do fine and that it will be much less objectionable than you expect.

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4 years 1 month ago #49282 by OldEngineer
O.k. saw the oncologist at Sloan Kettering yesterday, wanted to report information that others may find useful.

First, I asked whether it is possible by looking for genetic markers on tumor cells, to determine whether BCG treatment is more or less likely to be effective. Answer: not at the moment. Research underway but at present, can't distinguish those cancers which will be more susceptible to BCG from those which are less susceptible.

Second, I asked whether cancer type can be distinguished through pathology with more specificity than just "low grade" or "high grade." Answer: not usefully for treatment purposes. Yes they can see differences on a cellular level but nothing that is clinically useful at the moment.

Third, I asked what the overall likelihood of recurrence was and what parameters went into calculating that. Answer: size of tumor upon first detection was important; general probability for recurrence is around 34% for first five years but they took the size of my tumor (17mm X 14mm X 11mm), plugged it into an equation they had and calculated 46% in my case. Oh well!

Finally, I asked them about whether the discomfort I was continuing to feel in the bladder could be an early recurrence, they reassured me that was certainly not the case, just the bladder healing from the TURBT (which at this point was 19 days ago). I have a follow-up cystoscopy tomorrow and then a followup TURBT probably next week to ensure that the tumor was fully removed the first time.

One other note. I told the doctors at Sloan Kettering that owing to a very bad childhood memory of cystoscopy, I really needed to be knocked out for any transurethral procedure, but did not mean to sound like a wimp - this was just my biggest phobia in life. They assured me that there are many patients in my category and it is not uncommon to use propofol for such procedures although of course they prefer not to since anesthesia brings with it its own potential for complications.

So that's what I learned. I'll probably start the BCG in a few weeks, unless the repeat TURBT finds further evidence of cancer in which case cystectomy becomes more likely. Only time will tell.

T1 high grade transcell diagnosed 8/14/2015
TURBT 8/21/2015, removed tumor (17mmX14mmX11mm)
Repeat TURBT performed 9/25/2015
Pathology Report: no residual cancer detected
BCG planned starting in October

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4 years 1 month ago #49262 by OldEngineer
Alan - thank you as always; yes CT scan showed 17mm X 14mm X 11mm so almost 2/3 inch in diameter. Urologist did dig into outer layer of muscle and say no tumor hence T1 is how he graded it. I am indeed hopeful that the damage to the muscle is what is taking so long to heal.

T1 high grade transcell diagnosed 8/14/2015
TURBT 8/21/2015, removed tumor (17mmX14mmX11mm)
Repeat TURBT performed 9/25/2015
Pathology Report: no residual cancer detected
BCG planned starting in October

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4 years 1 month ago #49261 by Alan
Engineer, your tumor and experience is almost spooky similar to mine. The only thing that left fairly quickly was any pain from the TURB. Mostly just light spasms for 2-3 days. Your follow up cystoscope may shed some light of your continual pain. I am guessing he just had to dig deeper than expected. Seems like your tumor was somewhat larger than mine was.

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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