Question Re Monitoring

1 month 2 weeks ago #61489 by sara.anne
Replied by sara.anne on topic Question Re Monitoring
May I second your comment about not stopping your annual exams...ever?  I am now almost 14 years out and this spring my urologist found a "red spot" in my bladder.  Had a TURB and it turned out to be "irritation" and negative for cancer, thank goodness.  Had a six months checkup last Monday and am still all clear.  

What a relief!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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1 month 2 weeks ago #61487 by Greatful
Replied by Greatful on topic Question Re Monitoring
6 years ago I went to the ER in severe pain.  They determined I had kidney stones.  Upon surgery to remove them, the Dr. discovered I had in situ bladder cancer.  I was given the full 2 year + BCG treatment.
I was examined every three months, then 6 and them once per year.  Always had clean outcomes.

The sixth year upon watching the monitor, the bladder walls which were always clean and bright showed a large bad area.  He discovered I had a muscle invasive tumor.  I had to have my bladder, prostate and two lymph nodes removed.  Standard RC.

Moral of the story....DO NOT STOP YOUR ANNUAL EXAMS EVEN AFTER 5 YEARS.

If I had it to do over again, I would insist on having them every 6 months even if my insurance did not cover it.

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2 months 3 weeks ago #61458 by busaman
Replied by busaman on topic Question Re Monitoring
I was diagnosed in April 2020, 4 large non-muscle invasive tumors removed, bcg, cystoscopies every three months, no new tumors but my cytology labs keep saying abnormal cells detected.  I also had two positive FISH tests.  Now I am finally being followed by an oncologist.  He says I am a "wait and see patient" meaning that I will have to keep undergoing cystos to see if I get any new tumors.  He also told me he might suggest another round of BCG.

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2 months 3 weeks ago - 2 months 3 weeks ago #61457 by Alan
Replied by Alan on topic Question Re Monitoring
The standard of care by the URO Association (someone can correct me if wrong), is 2 years of 3 monthly checks, year 3-4 is 6 months and then yearly. None of us are doctors so take anything I am going to say later, take it with the ole "grain of salt" saying
  
First, high grade does need a close watch. How big was the tumor? Mine was .5CM which is considered small. My URO did 3 months for 18 months, did every 6 months for the next 12 then yearly. His reasoning was there are also some small risks on these cystoscopies. Scarring, infection etc (I did get an unusual UTI on about my 6th scope). So, as we collaborated that is what we agreed to. Cytology, while not perfect, for every 6 months was also our protocol. Now it is every 12 months. They are notorious for false positives so take that for whatever that is worth.

I have learned, be informed, listen to your body and at some point, we have to trust our providers. This also means you can differ with them and chart your own course. I add that Stanford has a great reputation in urology. pat yourself on the back. It is good to be an advocate for your Dad.

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 3 weeks ago #61456 by sara.anne
Replied by sara.anne on topic Question Re Monitoring
It is really good news that he is still doing well!  I had a very similar diagnosis over 14 years ago and my follow-up schedule was about he same.   I did have two years of BCG/BCG maintenance treatments.

There is always a possibility that the cancer can return.  But the longer he goes the better the odds get.  I DID have a bit of  a scare this spring when my urologist found a bit of irritation during my annual cystoscopy.  Did a TURB and it turned out to be nothing.  

If your father is really concerned, this is something for him to discuss with his urologist.  While the schedule he is on is normal, his peace of mind is important also!

Good luck

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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2 months 3 weeks ago #61455 by Neelloo2626
Question Re Monitoring was created by Neelloo2626
Hello All: 

Question- my father was diagnosed with high grade tumor and in situ- non-muscle invasive three years ago (Diagnosis was March 2019).  Cystoscopies have all been clean for the last two years.  In his first year, he was being examined every three months, the second year- he was examined every six months and now the doctor is saying urine analysis every 6 months and cystoscopy once a year. 

Given that my father had high grade cancer- wouldn't protocol still be cystoscopy every 6 months?  My dad is nervous about waiting once a year. 

He does have a wonderful doctor at Stanford, but we are nervous to wait so long. 

Is this protocol standard?  What are the chances of bladder cancer re-occurrence? 

Thank you, 

Neelloo  

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