No treatment, only check up, should I worry ?

4 months 2 weeks ago - 4 months 2 weeks ago #60735 by RJake1
My initial diagnosis was Low Grade (LG) with a focal point (small spot) of High Grade (HG).  Urologist recommended 'watch and wait' as opposed to any active intervention.  I got a second opinion which agreed.  Made it nearly two years before recurrence.  Unfortunately, it came back as HG which resulted in a series of BCG treatments. 

Urologist advised if bladder remains clear for two years (inclusive of time I'm treating) my three month cytoscopy will be extended to six months and if clear for one more year it would go to annual check-ups.  Fingers crossed.  Good luck on your journey.

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4 months 2 weeks ago #60734 by sara.anne
Replied by sara.anne on topic No treatment, only check up, should I worry ?
I will concur with Alan since I am on what appears to be the exact same schedule!  Just had my 13 year cystoscopy (all clear!!)  BUT there is always the chance, small as it might be, for the cancer to reappear.  I don't really think about it at all until about two or three weeks before my annual exam.  Next week I will have a CT-urogram which my uro insists on every five years "just in case" the cancer has appeared in the upper urinary tract.  

I am really grateful for my urologist's care and interest.  And I am also grateful that this cancer has never returned.  BUT if it did I have every confidence that we would find it early and get rid of it again.  

Sara Anne

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

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4 months 2 weeks ago - 4 months 2 weeks ago #60733 by Alan
Welcome KK,

Typically it is 3 month check ups for 2 years, then years 3 and 4 it is 6 months and annually after. There are many volunteers on this board including myself that continue with the yearly checks. Does it ever completely leave my mind? No. At the same time it reminds me that life is precious and some day I will bow to my beliefs in something better. In between, it has made me stronger and more effective in life.

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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4 months 2 weeks ago #60732 by kkode008
Hello,

Thanks for the support forum, it helps a lot.

I've tried to read a few posts, couldn't understand many abbreviated messages, sorry for my ignorance.

Blood in urine: 06/2018; Ultrasound, cystoscopy: 06/2018
High grade Non-invasive papillary urothelial carcinoma: 08/2018
Removed tumor from bladder.

Follow up every 3 months: until 08/2019
Cystoscopy is clear and Cytology/FISH results are negative

Doctor advised 6 months check up since 02/2020.
All reports are clear.

I'm very happy about the results for now but worry about recurrence. Is there a time by which it re-emerges (or) a time until when it does not recur and I can stop worry.

I was a smoker and have quit since knowing in 06/2018.

I've not done anything different, there is no medicine to treat - yet all seems to be good. I'm just curious if anyone had such experiences.

Also, curious to know when does it switch from 6mo check to annual.

-K K

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