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still pain and dysuria 3 years after turbt and bcg

3 months 3 days ago - 3 months 3 days ago #58840 by Alan
If there is anything I have learned from a few aquaintences I know and posters on this board... there can be a time to abandon BCG because of damage. The problem is we all process pain and discomfort differently. Here's hoping everyone heals quickly. Nothing says you have to continue to still have some value already received from this treatment. I now after 12 I was ready to stop but, me regimen was different than many. 6 weekly, 6 off then 6 more.

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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3 months 3 days ago #58839 by Knifedealer
"horrible bladder spasms and return trips to hospital emergency rooms. i refuse to go thru the hours of agony again after cystoscopy"

I'm sorry you've had such difficulties. My journey on the bladder cancer train began just over a year ago yet I can relate to negative side effects from repeated cystoscopies, 2 TURB (one including MMC, which I found barely tolerable) and a 6 session BCG induction, just completed yesterday. While bleeding after BCG session #2 and #3 had me VERY worried (cleared 8 hours post-instillation), nothing I've endured necessitated an ER visit. Not yet, anyway.

Sara Anne summed it up in 8 words below. Discuss your current issue with a urologist. While another cystoscopy may be the ideal course of action, there may be less invasive options that may provide clues as to why the pain remains: cytologic exam, sonogram or a CAT scan perhaps.

Regardless, my hope is the best of all outcomes for you.

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3 months 4 days ago #58838 by Shacky73
I had first cysto in April. TURBT with urology on Prostate in June. Second OR biopsy in August. 6 mitomycin treatments starting late September. Another in office scope at MSK just before Thanksgiving.

Have to go in for 3rd OR procedure next week for biopsy. And I am not looking forward to how I’m going to feel afterwards.

When I have to pee which is quite often I get pain. I don’t know if it’s the prostate or bladder but if I try to hold it it can get pretty bad. Wears me out.

I feel for you have these symptoms for 3 years!!!!

T1 Grade 3 with CIS

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3 months 4 days ago - 3 months 4 days ago #58837 by dtat60
Hi downeaster,

Originally I didn't have any pain just bleeding when urinating. Now after my treatment (2 turbt and now 21 BCG) things have never been the same - still some bladder pain and I don't think my prostate will ever be the same. Especially after my last 3 BCG it was dramatically worse. However, I can live with that as it is more worrisome than painful. My treatment was temporarily postponed because I was diagnosed with Non-Hodgkin's Lymphoma and I could not get my BCG maintenance because my Oncologist told my Urologist that I would need to let my immune system get back to semi-normal first. After having Chemo and radiation for the NHL, it worked out pretty well because at the time there was a BCG shortage so by the time it became available I was kind of back to normal (or at least my new normal).

I always worry and dread before my Cysto and just hope things are OK. I am so tired of the Doctor treadmill but just try to "keep hope alive" and cherish every day now.

Hoping 2020 will be a positive year for all of us......F*** Cancer!!

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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3 months 4 days ago #58836 by downeaster
to start with, my urologist would want to go in with cystoscope again ....the last three cystoscopes i received ended up with horrible bladder spasms and return trips to hopital emergency rooms. i refuse to go thru the hours of agony again after cystoscopy....I also have an enlarged prostate with a couple of nodes... I now only have to get up once a night to pee which is ok..

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3 months 4 days ago #58835 by sara.anne
This is definitely a question for your urologist.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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