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Post TURBT meeting w. urologist: appropriate questions
Hello again. It’s been 10 days since TURBT and I feel great other than pain, primarily burning, during urination. I told my wife it feels like I’m peeing napalm.
As I was being prepared for TURBT surgery, a number of questions arose about the procedure that I wish I had asked my urologist weeks prior. I realized then that I didn’t know what questions to ask until it was too late (e.g., so doc, how many times have you actually performed a TURBT?). I don’t want to make the same mistake when I see him this week to discuss the pathology report which I assume will reveal stage, grade, and treatment options and recommendations.
So I’m asking you … is this (see bold) what I should expect during the first meeting with uro after TURBT and what questions are “must asks” at this time?
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11 Replies
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I sang. Made up a song when it started hurting. It really helped.
Next time I’m going to do that AND curl my toes! -
I agree with Alan, cystoscopy is a minor inconvenience but it is necessary. You’ll get used to them.
I dread any and all procedures, but positive thinking has helped me. My doctor applies a mild local anesthesia before inserting the scope and that seems to help a lot.
Now that I am 5 years into this bladder cancer thing, cystoscopies, catheters, biopsies, and BCG are just things that I tolerate. I’m happy to have a bladder, and I’ll continue all of this for as long as it takes if it helps me retain my bladder.
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You don’t want propofol or any other more active anesthesia drugs or more invasive procedures if you can avoid them. That is simply good medicine. Do the least invasive protocol. Propofol? My last surgery which was carotid artery surgery put my bladder to sleep where I had to wear a catheter for 5 days post. It is called (POUR) post operative urine retention. Scopes last all of 5 minutes Do a little self hypnosis. If this the worst you and the rest of us endure so be it. Better than inviting other problems.
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.[quote=”Knifedealer” post=56318]Thanks to all.
I will take your advice Sara Anne and keep my appointments, even if I cringe at the thought of more cystoscopies. The first and only one I had was painful, especially as the cystoscope passed through the prostate.
My wife has been very supportive throughout this process. She was diagnosed with breast cancer a few years back and is much more knowledgeable about cancer than I. Being aware of my … well … cystoscopophobia, she began researching non-invasive bladder tumor marker tests and asked my urologist about these when we met yesterday. He stated that while some of these tests may show promise, a cystoscopy in 3 months is the standard protocol for those with my diagnosis.
My best to all.
PS, during the cystoscopy, when the pain became overwhelming, the nurse instructed me to curl my toes. In hindsight, the technique worked as it redirected the focus of my attention away from the “flexible” tube traveling where no flexible tubes have ever gone before.[/quote]
I also suffer from this “cystoscophobia”! I have been wondering why they don’t do cystos like they do colonoscopies? A little propofol, off to dreamland, then right back. I have no problem going back for a colonoscopy, but the idea of going through a cysto again gives me off-the-charts levels of anxiety. Mine hurt…not discomfort, but pain, and I did indeed yell out as he went through my prostate. The toe-curling I did on my own, as well as being as tense as a two-by-four. I know that’s when, because he told me, “OK, now you might feel something as I’m going to go through the prostate”. Hey bub….I felt something the whole time….but thanks for letting me know it was about to get a lot worse! Couple that with the fact that I already suffer anxiety from any work done down there stemming from many childhood surgeries, and well, I just wish there was a better way. Like propofol! Does anyone know why they won’t just make that an option?
Knife,
The scopes are a little more uncomfy for men than women because of the prostate. I handle it similar as you and try and engage my mind for the 15-25 seconds it enters on something else including toe curls. I also add that it is more uncomfortable than painful….of course that is subjective and I add that is will be over than quickly. The only other part I dislike is the voiding for 2 or 3 times with irritation after but, that passes quickly also. To top it off I tell myself if this is the worst I will endure from now on it is worth it! Really, it is more of a nuisance.
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.
Thanks to all.
I will take your advice Sara Anne and keep my appointments, even if I cringe at the thought of more cystoscopies. The first and only one I had was painful, especially as the cystoscope passed through the prostate.
My wife has been very supportive throughout this process. She was diagnosed with breast cancer a few years back and is much more knowledgeable about cancer than I. Being aware of my … well … cystoscopophobia, she began researching non-invasive bladder tumor marker tests and asked my urologist about these when we met yesterday. He stated that while some of these tests may show promise, a cystoscopy in 3 months is the standard protocol for those with my diagnosis.
My best to all.
PS, during the cystoscopy, when the pain became overwhelming, the nurse instructed me to curl my toes. In hindsight, the technique worked as it redirected the focus of my attention away from the “flexible” tube traveling where no flexible tubes have ever gone before.
Brilliant news Knife, I hope all goes well for you!
28/10/18 – Blood???
24/12/18 – Dx TaG2
15/01/19 – Start BCG
06/04/19 – Cysto + Biopsies – CANCER CLEAR
Good deal! Happy for ya!
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.
That is really GREAT news!!!
Just be sure to keep those urology appointments over the next few years!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Met with urologist this morning to review pathology report and was told that both tumors were diagnosed as low grade papillary urothelial carcinomas that were both negative for lamina propria and muscularis propria invasion.
Other than the growths not being cancerous at all, I think this is the best I could ask for as Alan indicated.
He want to see me in 3 month for a cystoscopy. Meanwhile the dysuria has subsided considerably and the anxiety is gone completely.
In my case, I was lucky that the tumor was found early. I had no blood in my urine, no pain during urination or pelvic pain. The tumors were a surprise, identified during a cystoscopy that was done to determine the extent to which my moderately enlarged prostate was constricting my urethrea.
Thanks for your kind words and support. I will continue to check in from time to time. Best of luck to all.
I will answer in general terms as you doc’s answers are normally cut and dried (routine) to your questions. First let’s hope is not even BC! If your grade is low, and stage 0 or 1, you have the best of all DX. You will probably be set up on every 3 month scopes for up two years, then every 6 months or 2 more then yearly (commonly called “watching and waiting”). If it is high grade and stage 0 or 1, often a second TURB is common just to safe the staging is correct. Then BCG as immunotherapy is a common response to treat. Also add the same response on scope schedules. If any of tests show stage 2 or worse, that usually means a cystectomy as not doing this will decrease surviving goes down dramatically.
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.Sign In to reply.
