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Post TURBT meeting w. urologist: appropriate questions

1 week 16 hours ago #56384 by pnkproxy
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!

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1 week 3 days ago #56353 by EdFlaherty
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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1 week 4 days ago - 1 week 4 days ago #56352 by Alan
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.

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1 week 4 days ago #56346 by carlton

Knifedealer wrote: 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.


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?

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1 week 6 days ago #56328 by Alan
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.

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1 week 6 days ago - 1 week 6 days ago #56318 by Knifedealer
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.

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