TURBT Followup - Thoughts Welcome!

3 years 2 months ago #60421 by JigStep
Replied by JigStep on topic TURBT Followup - Thoughts Welcome!
Hey, Donald.

It's been about 3 weeks now sans coffee. I don't notice much in the way of negative effects, maybe some mild withdrawal headaches for the first few days. I'm trying to drink lots of water. My wife's still drinking coffee, so walking past the pot is the hardest part.

My motive is to avoid another unnecessary TURB, since what the Doc saw on two occasions, apparently, was not cancer. Recovery after TURBs hasn't been a cakewalk for me.

Stu

7/18 Gross hematuria; 8/18 TURBT: papillary urothelial carcinoma, LG, T1; 12/18 TURB: benign urothelial mucosa, cystitis; 9/19 TURBT: papillary urothelial carcinoma, HG noninvasive; 6/20 TURB: NED, inflammation; 10/21 TURB. NED, inflammation.

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3 years 2 months ago #60406 by DonaldK
Replied by DonaldK on topic TURBT Followup - Thoughts Welcome!
Linda

I feel you on all accounts, do keep us in the loop.

Hi Grade T1 CIS

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3 years 2 months ago #60405 by Lin281693
Replied by Lin281693 on topic TURBT Followup - Thoughts Welcome!
Donald

I was diagnosed with non invasive bladder cancer 7 years ago. Did not have BCG at the time. About 3 years later it started to reacur, once a year, then 2 times a year, then more often. I think it was 3 times in 2020, so although it remains non invasive and mm small, my dr wanted me to go through the BCG. I handled it well with minimal cystitis. I'm going this coming week, (its been about 9 weeks since the last BCG) for my post cystoscoopy. Always feel a dark cloud over me, expecially this year with the virus and our country in such a sad state. But I'm staying positive. (really getting sick of staying home though (i'm one of the elderly) and watching the idiot box).

Keep well. Linda

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3 years 2 months ago #60403 by DonaldK
Replied by DonaldK on topic TURBT Followup - Thoughts Welcome!
Linda

Keep watching the forum - I have set it up so that I get an email when new things are posted so I can read/reply.

I'm curious to know - when is your cysto scheduled for - I think my first one was 3 months after I finished the instillation phase.

Keep your head up and have faith everything will work out as it is suppose to.

Ciao

Hi Grade T1 CIS

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3 years 2 months ago #60402 by Lin281693
Replied by Lin281693 on topic TURBT Followup - Thoughts Welcome!
Donald,

thank you for responding and sharing your experience with me, it is comforting knowing people care about one another. So I'll see when I get my follow up cystocopy. You take care.


Linda

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3 years 2 months ago #60401 by DonaldK
Replied by DonaldK on topic TURBT Followup - Thoughts Welcome!
Linda

Congrats on finishing your initiation phase, I hope all has gone well and you were able to handle it okay.

Regarding your question - there are BCG shortages, but that doesn't mean you will not be able to get follow-up treatments. An open discussion with your health care team with this specific question is probably the first place to go for answers. Remember, they are there to help you, but you must be diligent in asking for direct answers.

I was involved in a research study (until I cold no longer tolerated the maintenance schedule) looking at the TICE strain (American version of BCG) and the TOKYO strain (European version of BCG) - so there were not shortage issues. I was in the TOKYO arm of the study, receiving 80mg installations, I did the initiation phase and 2.75 rounds of maintenance after which my bladder could no longer tolerate the treatments (interstitial cystitis resulting in bladder crippling [i.e. spasms, pain, frequency, continence issues]).

I have since been on the mend and most of the crippling (the term my oncologist used - not an actual medical condition) have cleared up.

When we decided I could no longer participate my doc explained that when this treatment was first develop only the initiation phase was performed, but over years of treatment usage there has been indication that follow-up maintenance improves outcomes (although it is only about a 2% difference).

I am currently being monitored with cystoscopies q3 months, but I should be changing to q6 months soon as it has been almost 2 years since I was diagnosed.

I have been told by my onco doc, as well a another urologist I sought out for more insight, that I am cancer free. That for all they know, the cancer won't come back, it is the cysto's and cytology that will continue until I hit the 5 year mark that will tell the ultimate outcome.

I am unsure if this has helped or not, but I just wanted to provide my experience, strength, and hope on the question.

Please keep us in the loop of your journey and remember you are not alone in all this - we are with you (here and in spirit) as you progress.

Ciao

Hi Grade T1 CIS

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