Poll: Did your uro do a cysto BEFORE deciding to do a biopsy?

[ScrabbleMom]

I was wondering people's doctors initially scheduled the cysto with biopsy or did a cysto first BEFORE deciding to do a biopsy.

Thanks in advance!

[c2miracle]

Hello ScrabbleMom:) I had my cysto-hydrodistention and biopsy at the same time. :)

[ScrabbleMom]

I ask because my doctor seems to believe in doing in-office cystoscopy before deciding to do a cysto with biopsy- I wanted to compare what other doctors do.

[ICNDonna]

I had a cystoscopy in my doctor's office as a part of the process of ruling out possible problems. I had several different tests before the hydrodistention and biopsies.

Donna

[Briza]

Hello ScrabbleMom:) I had my cysto-hydrodistention and biopsy at the same time. :)

Same for me. After much discussion with my uro and thinking on my part was determined that regular in-office cystoscopy would be next to impossible for me, particularly because I was suffering from severe Vulvodynia and SEVERE Vulvar Vestibulitis at the time...there was NO way the camera thingy used to do cysto would have been anywhere near tolerable for me while awake, because my inflammation down there was SO bad.

JMHO, but if a patient IS going under general anesthesia for a cysto/hydro might as well get biopsy done at same time. If it were me, and dr was not going to do biopsy when patient is under general anesthesia for cysto/hydro, I for one would insist on having the biopsy taken at same time...not many would want to go thru the entire procedure again just to get biopsies, if patient or current or future dr(s) decide they want biopsy that could have been taken during the initial cysto/hydro. The biopsies are itty bitty tiny,like 2x2 mm, and pain or other symptoms during recovery after a cysto/hydro seem to be most often from the cysto/hydro itself, not the biopsies.

I know that probably doesn't help much with your situation, Scrabblemom. I have read MANY posts that in office cysto is pretty routine, tho, in dx process. Just my process was complicated by the V and VV. I actually finally agreed to just a cysto and biopsies under anesthesia, as yes, I did feel my bladder needed to be looked at and felt like biopsies would put both mine and my drs mind at rest regarding the cancer issue. I was VERY wary of the hydro part, and had an agreement with my uro that she would distend ONLY if she felt was necessary, which apparently she did, because she distended me to a whopping 1275ml(that is more than I have EVER read anyone being distended in my years on this board) and apparently she found hunners ulcers and burned them off, in addition to taking the biopsies (which showed signs of inflammation indicative of IC but no cancer, thankfully). I did have much pain and horrid complications after my cysto/hydro, but I strongly believe that the severe pain and complications I had were due to being distended WAY more than necessary and very poor post op care (esp when complications began just hrs after I was sent home from the outpatient surgery), NOT due to the biopsies that were taken.

[Smokey]

had my cysto-hydrodistention and biopsy at the same time too!!

[Preacher-Girl]

I will have cytoscope/hydro and, if necessary, biopsy all in same procedure inJune.

[ScrabbleMom]

My doctor doesn't believe in hydro for diagnosis. Maybe he does it for theraputic reasons later on... It' s so strange how differently doctors do things.

Bri, I'm so sorry you've had such a bad experience. I hurt for you.

[Kieri]

I would go for both at once if you have to have the biopsy or if there's a good chance you will have to. Talk to your doc, that's what I did, but your decision is yours. Good luck! :)

[ScrabbleMom]

I have "recurrant microscopic hematuria" (small amounts of blood in my urine)-the uro said there is a 1 in 20 chance there's a tumor. I think I am headed for a biopsy (I can't imagine not having a biopsy with the chance of there being a tumor). I have my apt for next Wed. at the hospital under conscious sedation. He gave me the choice to do the in-office flexible cysto (with no biopsy and not even a valium beforehand (which is illegal in this state)) or to be sedated at the hospital where I *assume* he'll go ahead and do the biopsy while he has me under. I think I'd rather have it all done in one shot since I am such a whimp. I screamed while gettng a catheter-- probably because of the vulvodynia.

I am grateful to read everyone's response-- knowledge really is power.

[waterflow]

I had biopsy, cysto and hydro all at the same time too. I knew someone who also had the cloropactin done at the same time and their IC went away for good after that.

[Mrsrea]

My doctor told me right out that they dont like to do biopsies anymore at all. So I didnt get one. I was diagnosed with an in office cysto fully awake with no meds!! I was hysterical it hurt so bad. Then 4 days later I had surgery so they did the hyrdo then as well as dilate my urethra and make an incision in my urethra to try and make it larger.

[Briza]

I have "recurrant microscopic hematuria" (small amounts of blood in my urine)-the uro said there is a 1 in 20 chance there's a tumor. I think I am headed for a biopsy (I can't imagine not having a biopsy with the chance of there being a tumor). I have my apt for next Wed. at the hospital under conscious sedation. He gave me the choice to do the in-office flexible cysto (with no biopsy and not even a valium beforehand (which is illegal in this state)) or to be sedated at the hospital where I *assume* he'll go ahead and do the biopsy while he has me under. I think I'd rather have it all done in one shot since I am such a whimp. I screamed while gettng a catheter-- probably because of the vulvodynia.

I am grateful to read everyone's response-- knowledge really is power.

Hi
Just want to say to not assume that your dr will take biopsy. Discuss beforehand (not day of the surgery) and let your wishes be known. Don't assume anything. It is YOUR body, YOUR surgery and if you want biopsies then just flat out tell dr that you expect them to be taken.
Also, you will want pix of your bladder for your own file. Do not assume that these pix will be provided for you, because more times than not only one set is taken for your medical in office file. You really want to have your own copy, so that is another thing to discuss and insist on having before the day of surgery and on day of surgery remind remind remind anyone who may be present during the surgery that you want pix, b/c depending on drs surgery schedule, you may or may not see dr b/f the surgery. And once they drug you up, then you're not gonna remember to remind about they pix!lol

Well, I have read here and heard from my drs that VISIBLE growths/tumors CAN be seen and those as well as bladder wall can biopsied both during in office cysto, or just cysto(no hydro) under some sedation in hospital. 1 in 20 chance seems suspiciously high to me, don't let that scare you, b/c I think the odds are MUCH lower than THAT, IMHO! Even if there is some sort of visible growth or tumor, the odds of it being malignant are EXTREMELY low...please take care and please do no assume anything. You are paying for this procedure, so anything you want, should be made possible, within reason, of course..and biopsies and photos for you to take home are WELL within reason, believe me!!!:kiss:

[Briza]

My doctor told me right out that they dont like to do biopsies anymore at all. So I didnt get one. I was diagnosed with an in office cysto fully awake with no meds!! I was hysterical it hurt so bad. Then 4 days later I had surgery so they did the hyrdo then as well as dilate my urethra and make an incision in my urethra to try and make it larger.

:grouphug: I wish all drs would get on the same page. I think most patients would agree that biopsies are well worth it if for nothing else than peace of mind to get fears of bladder cancer causing bladder problems (tho bladder cancer rare for IC patients, the symptoms of bladder cancer can and do mimic symptoms of IC!!!).

((hugs)) I am sorry for your in offce cysto and other painful experiences that all too often we have to submit to to get dx and/or treatment. So not fair:( I hope you are making improvement now!:)

[ScrabbleMom]

Thanks for the tips and the hug, Bri! It is easy to get worried about cancer-- thank you for the positive reassurance.

I will definitely ask him about the biopsy. I know that it is a much different type of scope they use when you get the biopsy (the rigid one which is harder on your body). I guess I'll say, "please do the biopsy if you think it's necessary."