Cystoscopy Advice

Hi everyone. I had a questions for those of you men who have been through this. As you know my husband was diagnosed with BC in August 08. He has had 1 turb, and two cystos with biopsies, all done at the hospital under anesthesia.

His last tests were clear and now the doctor wants to do a cysto WITHOUT biopsy in the office after his bcg treatments using numbing instead of anesthesia. He says this is fairly routine and generally an office procedure. My husband is totally against this as he is scared "s---tless" of having to do this witout being under.

I would appreciate your input. I can't imagine what this would feel like (being a woman) but I think he should at least try this once. His doctor says he will need many cystos over time and that he does not need to have them in the hospital unless biopsies are done.

Any experience here would be helpful.

Thanks,

Ellen

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Hi Ellen,

I recently had a scope with very little "concious sedation". It was a bit uncomfortable. I will ask for more relaxing juice the next time. It was really more of discomfort, like a digital rectal exam than painful. If you tense up down there it makes it more uncomfortable so I recommend going the concious sedation route. The anxiety before the procedure is worse than the procedure. Tell him "piece of cake"

Your husband and I were diagnosed at the same time.

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Ellen:
When I have the cysto; I have it in the office with no anethestic and they do a test of the fluid and no biopsy. This is common practice at my dr.s and at University of Michigan Urology/Oncology. They test of fluid checks for cancer cells. I have questioned this also and was told by both dr.'s that this is how they do it now unless the cysto dictates a biopsy(questionable tumors or tissue will dictate further investigation like biopsy and/or TURB).
Good Luck.
Arlene

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Hi Ellen -

Shiz has it exactly right. It will happen faster than he can sneeze and be done. Your hubby will be OK -- really.

My doc doesn't give me anything for the cyto. Maybe he puts some numbing gel on it -- but I don't think so. He tells me to "curl my toes to the ceiling" and "breathe deep". It's an odd feeling -- burning and feeling like you have to go at the same time. Kind of like being cathederized except you feel like you have to go through the whole thing. It's not that bad -- really!

Uncomfortable is a good adjective for it. It only lasts for about a minute though. It's bearable. He may have a little burn (nothing like BCG burn!) first time he goes to the bathroom.

Hope that helps -

Best -

Pat

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All of my cystos have been done in my urologist's office and none have been a probelm. There is very little or no pain. My urologist always puts some numbing gel in and the only pain, and not all that much, is when the scope goes through the sphincter muscle in the bladder. There is a little burning on urination afterwards for a day or so but not all that bad. I'm a real wimp when it comes to anything having to do with my private prtsand bladder and I have no concern about the cystos at all. But I can understand your husbands anxiety. Really, he'll be OK. Just ask his uro to be sure to use numbing gel, I think that is procedural for males anyway and my doc uses it with his female patients as well. Hope this helps.

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all my cyto's were done with the "local" anethesia,,,,which is code for basically numbing gel .....not pleasant, but bearable and only a few minutes. i've had a few caths without anesthesia that are far worse.
i just put my mind elsewhere for a few minutes, and just think it will be over fast.
its minor considering the alternative, many here have to self cath following an RC with neobladders.
its only hurts for a couple minutes...and the painful urination for a few days....but like i said...its really minor...
killing the cancer is well worth it.
don't be scared.....its not that bad.
quick and done
best wishes
dave o

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I have never been put under for a cysto. I've had 6 so far. Its not that bad. I take nothing for it and maybe he uses numbing gel not sure. I did request the flexible scope last time versus the stainless steel rod but felt no difference in pain/non-pain level.

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hi ellen i had my first cysto in my first doctors office it is uncomfortable but not painful they shoot a numbing jell first up the urethra leave the room for about ten minutes to let you numb the most uncomfortable part for me was when i still had the prostate i felt like i was going to pee in the doctors face lol he will be fine nothing to worry about for him it is a lot less painful then when they do the biopsies good luck ed

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To: Ellen
Let me add my experience to that of the folks above. Diagnosed w/ BC in 02/2008, I've two turb's , one series of BCG-six instillations, BCG cystitus (bad!), followed by five systoscopies - all in the urologist's office. I wouldn't characterize the cystoscopies as "ho-hum"but compared to the preceding , almost so. They're painless, really. Don't take counsel of your fears. chuck ryan

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Hi, Ellen

I have had 11 cystos all with just the numbing gel.

Two of those cystos, he also took biopsies, a little pain, but alot less than a Cather.

Tell your hubby, not to worry, no pain, just a little uncomfortable. If your Uro uses the new hi-tech screen, hubby can watch the monitor along with the Uro.
I wish you and your husband continued clear Cystos.
Jack

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Ellen

The cystoscopies are really nothing to worry about as far as pain. They first insert a painless gell to numb the area with little discomfort.
Knowing how it feels there will probably be a lot of men who would do it for $10.
The BCG treatments are much harder since they don't use a gel. but the tube is much smaller.

But the cysto's panic should come from the anticipation of what the doctor's findings. The pain of inserting the cysto tube is little to none. Thanks to the magic gel.

EricAndre








EricAndre

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Hi Ellen,
All of my cystos were done in the doctors office and I had a lot of them over the 1st 7 1/2 years with BC. Probably for the 1st 1 1/2 years he only used ky jelly. After having been tortured for so long and just being in the same room with the scope caused pain, he started using the numbing gel. Also he started using a flexible scope which improved the situation. All of the TUR and biopsys were done under anesthesia, except for one when I was told that I was having a regular cysto so I ate breakfast that morning. They had neglected to tell me that my cancer was back until I was in OR . They ended up giving me a spinal that time.
Have your husband take a couple of Tylenol before the cysto that may also help with the discomfort.
This is all little to put up with for staying alive. I wish you both the best.
Keith

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In 2000 following a TURBT, I had cystoscopic examination with no anesthetic. I don't know what the fear is. I found it absolutely without any pain whatever. It was fun having the Urologist moving it inside my bladder, explaining exactly what he was seeing, using it to explain why I need to have a radical cystoprostatectomy performed!

HighlandGuy

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Just had my 8th (w/ biopsies)- all together 4 with biopsies- two truths- it's uncomfortable, not painful; it is a mercifully brief procedure. Better w/o anesthesia; one can leave more quickly. And yes, I always feel anxious starting about a month before (I am on yearly cysto watch.)
Best of luck-

Tony

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Ellen I had my first cysto done with only the numbing gel and no problems what so ever and the test was over before I knew it. Only wish the results were better. GL, Joe

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Ellen,

A little numbing gel and they are in and out. Just a little pressure as they pass the prostate. Its just like the cath being used to instill the BCG. Not a big deal, he will be fine.

Best wishes,
Battle on,
JerseyGuy

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My doc lets me look in the flexible scope he uses. It's pretty cool. Since we talk about fishing and cars and things while he does his part, which really does not take long at all, it's over pretty easily. Shiz likes to have some relaxation juice prior to it and thre is certainly nothing wrong with that. And taking some pain med before hand helps too. I don;t use either but maybe next time, like next week, I'll take my tequila with me.

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Hi Ellen, I can apprecaite your husband's feelings and fear... but please tell him that the fear is much worse than the actual cysto. I like you husband had my TUR in Sept. 08 and doing the cystoscopies every 12 weeks. Next one on the 30 of April. My uro does not use anything at all... just inserts the flexible tube and tells me to close my eyes and take a deep breath and it's almost painless. A slight pain for only a second when the tube passes by your prostrate according to my uro. It's over in a minute and the most important thing is the results. Also tell you husband that most of us have had much more pain in the dentist chair.
I hope the results are good for him and he gets a clean report.
Ken

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Hi everyone, and thank you so much for all of your responses. I have emailed all of them to Steve in the hopes that he will open and read them (he says he will not), but I flagged to get a receipt email when read and they were opened. He is very hard to deal with and doesn't want anything to do with all the wonderful help and support we all have here. Maybe he'll soften up after reading some of your mail. Thank god I have all of you!!

Ellen

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Hi Ellen and Steve,

My one and only cystoscopy was done in office with local (urethral numbing gel), flexible scope, and no other anesthesia. It was not nearly as bad as I had anticipated, but was uncomfortable. I was definitely glad when it was over, but not so bad that I wouldn't willingly go through it again. Best wishes for a clean cysto with little discomfort.

JJ

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I have mine in the office every three months, if he needs sedation they can give him a xanax in advance or use conscious sedation however they are not set up to monitor him like in a recovery room. So a mild sedative like xanax would be better. Office cystos for following are routine. I have had now in excess of 20 of them. Not a problem with any of them

Nancy

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