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12 years 2 weeks ago #16669 by jj22

Thanks for all the responses. It's good to know that (unfortunately, of course) other people have been through this before. When I first started to imagine the "C" word might be a possibility, it was pretty unreal, very scary. The more I learn about bladder cancer, the less horrible it seems.

As for the cystoscopy, its good to hear that its not too painful. I'm a real wimp when it comes to pain, and pretty squeamish about blood & guts & body parts, but it will be good to actually see what's going on in there. I'll be in touch.

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12 years 2 weeks ago #16666 by newbie08
Hi JJ2,

My father had his 1st Turbt last week, his cystoscopy was about 4 weeks ago, I obviously can’t speak for him totally but thought I could give you an idea of what I saw, my dad went to doc with visible blood in his urine (there was a lot of blood, never mentioned clots??) he had no pain either! He was given 2 weeks of antibiotics to see if it was an infection, these didn’t work so he was scheduled for a cystoscopy. The cystoscopy wasn’t too bad, think it was mostly the fact that he thought, the same as you, no tube should be going up that direction ha ha !! The procedure was more uncomfortable than anything else, my dad said it was a little painful but didn’t last long, he’s not a great patient though, defo looking for more sympathy from us :D He was a little uncomfortable for a few days, more stinging than painful and then he was back to normal!

As for information given to my dad, as the doc was doing the cystoscopy, my dad was allowed to watch the screen, he was told (and shown) a “growth”, he told him it was quiet big but said he couldn’t tell anymore until biopsy results, he didn’t give him any indication of stage/grade etc, he scheduled him in for a TURB (4 weeks later – 6th May) He was told the IVP was clear at the time by the doc, he had his CT scan last Wednesday (post Turb) and was given good news that the CT was clear on Friday! I think we can deal with most other things once its just in bladder! So now we’re waiting on biopsy results, they are out this week! So keeping fingers crossed at the moment, as I’ve said before, the waiting and the unknown is the worst part!!

Stay positive, I think that is the most important thing (as hard as it seems sometimes) and that is what we’re trying to do!!

I’ll be thinking of you…

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12 years 2 weeks ago #16620 by Patricia
Hi jj22...U.of Colorado is an NCI designated cancer is their link and just click on "medical team" to view their specialists.

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12 years 2 weeks ago #16614 by grampadonut
you MUST stay postive during this trip but you must be as agressive as the cancer
you must ask any and all questions you have..this forum is a wonderful place to start
its not fun , its not easy , "but" YOU WILL GET THRU IT

i just got dx t2/g3..waiting for 2nd opion but researching "what if"
there are many exp people here..use thier wisdom


dx t2-g3

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12 years 2 weeks ago #16612 by wsilberstein
     I won't say a cystoscopy is a walk in the park, but the fear is worse than the event. 7 years after my diagnosis, I've lost count of the number of cystoscopies I've had. I still don't like them... It would be pretty weird if I did  ;D, but you kind of get used to being instrumented.
     My urologist told me it was cancer at the first cystoscopy before the TURB, but it went right over my head. He kind of muttered, "It's not more than a grade 1 or 2." But I never quite understood that he meant cancer until he told me the biopsy results of the TURB. This stuff does kind of make your head spin, so you have to make sure your urologist talks to you and doesn't just make remarks he thinks you pick up on.
      I only passed one clot before the cystoscopy, but I was already seeing a urologist because of 8 years of urinary symptoms and microscopic blood in my urine. Plus, as a pediatrician I had the ability to run my own urinalyses and cultures. The clot I passed looked like a clot, and I felt it when it popped through my urethra. There is no reason a clot should look pinkish-white that I can think of. Crystals might, and could be associated with stones - but cancer is the most important possibility. I'm not saying it's your diagnosis, but it is the one that has to be ruled in or out with a cystoscopy and a TURB if there are any polyps, tumors, or areas that look like they could be CIS. If it's not cancer, the doctor has time to figure out the other possibilities.

TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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12 years 2 weeks ago #16610 by tate
umm yeah, lets let the pros find you some good Docs. That is ridiculous!!!
I can say that I have learned through the years or other problems..that whenever I have test done I get a copy of it. That way I don't have to worry that someone forgot to call me with results. I watched a movie a long time ago where that happened and it always has stuck with me.

This will be a hard and trying time -cause as I mentioned the waiting really try to get sleep, stay positive, and know that there is always someone here to talk and listen. A good support system can mean the world. Sometimes I got more strength from this forum then I did from my family/friends...And I luckily have the best family/friends ever...but it really helped to be here with people that really understand what I was/am feeling.

(were you asking what BTW meant? "By the way" - I wasn't sure if that was what you meant.)

take care and stay strong

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