Any advice for me?

2 months 2 weeks ago #62127 by Alan
Replied by Alan on topic Any advice for me?
As always, your research links are invaluable. Thanks.

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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2 months 2 weeks ago #62125 by joea73
Replied by joea73 on topic Any advice for me?
A very good question !!.  

American Urological Association (AUA) guidelines recommend the surveillance after treatment  as follows.

If the initial diagnosis was high risk non muscle invasive bladder cancers, i.e.  T1HG or CIS, which I think was your case. 
• Cystoscopy at 3 months
• Subsequent cystoscopy every 3–4 months for 2 years
• Then every 6 months until 5 years
• Life-long annual cystoscopies thereafter

European Association of Urology (EAU) guidelines have similar recommendation with life-long annual cystoscopies.

National Comprehensive Cancer Network (NCCN) guidelines say 10 year annual cystoscopies, then shared decision on surveillance.

www.ncbi.nlm.nih.gov/pmc/articles/PMC8261410/

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2 months 2 weeks ago #62121 by Alan
Replied by Alan on topic Any advice for me?
Fish is notorious for false positives. The cysto is the gold standard for DX on bladder cancer. The only other test, which is an invasive test might be the retro pyelogram which rotos up to the kidneys.

My wife had that done some 35+ years ago and they found NOTHING after passing blood after a few weeks. Also, keep in mind none of us are doctors. At some point you simply have to trust the process and doctors. The CT scan and PET scan probably would negate messing around with yet another invasive test.

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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2 months 2 weeks ago #62120 by busaman
Any advice for me? was created by busaman
Diagnosed four years ago.  Had Turbt, then bcg.  Since then I've had all sorts of mris, ct scans, cystos, etc. Even had my first PET scan, which was negative.  My FISH keeps saying abnormal chromosomes and bladder cancer, but in four years I've not had any new tumors.  Just had another cysto last Friday and bladder still clean. Do I just keep getting the cystos?  I was on a three month schedule, now on a 6 month schedule.  I had some reviews by an oncologist and he said he can't do anything for me unless/until I have a new tumor.

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