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TURBT Followup – Thoughts Welcome!
Hello –
January 2019 – Mom diagnosed with High Grade Non Invasive Bladder Cancer (Papilary Tumor only – no CIS).
Completed recommended treatment was a round of 6 BCG treatments (diluted due to shortage).
Followup a couple on months ago and there were no papillary lesions (tumors) present. However there was CIS present (which was a new thing)
Completed recommended treatment was a round of 6 BCG treatments – with Interferon.
Followup TURBT procedure today. The Doctor said there were no tumors – which is great. She did see “a couple of red spots.” Doctor took a biopsy and said results will be about a week. She said that could be the CIS again or it could be an inflammation. She said it’s about 50/50 as to what it is. Of course I’m concerned, because last time thse “red spots’ turned out to be CIS.
Logic of course says that I can’t worry until you get the biopsy results. The waiting is really hard – and its not exactly simple to not be emotional.
I’m curious on how this community would feel about the results from today. Are these red spots typically CIS? Given the result of these “red spots” last time – would you believe it truely is a 50/50 chance of it being nothing?
Thank you in advance!
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27 Replies
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Linda
That’s excellent news, I will keep you in my thoughts and hope for a good result on the biopsy.
Keep us in the loop.
Ciao
Hi Grade T1 CIS
Had my first cystoscopy since the end of my BCG treatments, all was clear, but he took a biopsy where the site of the last that was positive. I feel good.
.
Linda
Great news!
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.
Woo Hoo :woohoo: :woohoo: :woohoo: :woohoo:
Glad to hear such great news, continue to have faith in the process.
Thanks for the update.
Hi Grade T1 CIS
Results are in and all is good! This red spot was some past irritation or something similar. Thank God!
Stu
Thanks for the update – I feel ya on the caffeine headaches (one more reason I keep drinking coffee) :)
Please continue to keep us in the loop.
Ciao
Hi Grade T1 CIS
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.
Linda
I feel you on all accounts, do keep us in the loop.
Hi Grade T1 CIS
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
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
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
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
I’ve just finished my 6th BCG, and waiting to go for my post cystoscopy. I was told it is not easy to get follow up maintenance BCG, as there is a shortage. Was it difficult for you to get?
Linda
JigStep
LOL – I get the whole lock-down business ;^)
The granulomatous inflammation is pretty common with the BCG treatments – I get that reporting after ever cysto I’ve had since beginning this journey.
I admire your tenacity with respect to the coffee – I know for me that is the one thing that makes me pee all the time, but I am so used to drinking massive amounts of it that I find it difficult not to, it’s just my go to beverage.
I look forward to hearing your next set of results to see if this has helped with the inflammation. BTW – are you having issues related to said inflammation, or is it just something that is being noted on your reports. Am curious to know if you see or feel any differences in you daily routine through the removal of the coffee.
We are with you in spirit – please keep us updated on your progress.
Hi Grade T1 CIS
“Sunshine on my shoulder makes me…” Sorry, been locked down too long.
I’ve had cystitis, erythema (redness), and scaring since my first TURBT. It brought me in for two TURBs where no disease was found. The latest pathology said, “focal granulomatous inflammation consistent with BCG therapy” among other things. Doc’s cystoscopy notes always say erythema. Keeps me coming back every three months. I’m trying an experiment: no coffee ’til the next cystoscopy. No fun, but I want to see if it helps reduce inflammation. Will report back to the Forum.
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.Sign In to reply.
