Hello from a newbie

12 years 4 months ago #40254 by Alan
Replied by Alan on topic Hello from a newbie
PST,

Keep the board posted. Sounds like your URO is pretty sharp! About all one can do now is wait and see what the TURB reveals next week on stage and grade with even an outside possibility it could still be something else. You have done what you can do and am so much farther understanding than I was at this stage. Invariably someone will have an answer for you on this forum as you go further in this. I am certain you'll be fine!

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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12 years 4 months ago #40228 by PST
Replied by PST on topic Hello from a newbie
It looks like I won't be quite so rushed after all. The hospital made a mistake in its scheduling. I checked with the doctor today, and he definitely intended to wait until the following Tuesday to give me more time off my aspirin regimen. That makes perfect sense to me.

I don't think I mentioned how I actually received my diagnosis. The cystoscopy was going okay. It wasn't painful, really, but strange and unpleasant enough that I couldn't relax my body and was tensed up with clenched fists. Then the doctor says, "Hmm, see that," and his PA replies, "Hmm." Then the doctor asked, "Do you smoke?" It all seemed pretty clear then and there. The chat afterwards was anticlimactic.

As I mentioned before, I had colon cancer eight years ago, so my reaction was not quite the same numb, pole-axed feeling of a first cancer diagnosis. But I am trying to be careful not to assume that I know everything, or that what is true of one form of cancer is necessarily true of another. I will keep in mind the remark attributed (rightly or wrongly) to Mark Twain: "It ain't so much the things we don't know that get us into trouble. It's the things we know that just ain't so."

PST

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12 years 4 months ago - 12 years 4 months ago #40227 by Zarathrustra
Replied by Zarathrustra on topic Hello from a newbie
Welcome. Others here have given good advice.

I was similarly rushed to TURB (diagnosed Monday, TURBed on Wednesday). But in my case, I wish I'd have more time. You, fortunately, have got more up to speed than I did.

After your TURB, I'd take a bit of time to do more research into whatever alternatives your urologist and oncologist offers. My first four (yes, four) told me I only had a short time to live (weeks) and that there was nothing they could do for me - I was metastatic, stage 4, too far gone for any treatment. That was 4 years ago. I did have chemo in the end; and with that plus doing a lot of complementary stuff, am still going strong.

There's lots of blogs around too, as well as this great site. My own may be of interest: link removed as it went to generic blogs not a personal blog.

Together, we'll all do better.

Best wishes

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12 years 4 months ago - 12 years 4 months ago #40226 by mmc
Replied by mmc on topic Hello from a newbie
LOL! Cats....now THAT's FUNNY! :)

I've had TURBTs and the catheter out the same day and then gone home, had TURBTs with the catheter out after 2 days, and I've had TURBTs with 5 days of catheter. It all depends on how much scraping and cutting they have to do. I also think it may be personal preference of the urologist.

You might want to call into your uro and ask how long he thinks you'll have it in after the TURBT. It's likely he has a general guideline he uses. Just ask through the nurse.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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12 years 4 months ago #40225 by PST
Replied by PST on topic Hello from a newbie
I'm curious why some people, like RB, have a catheter for ten days after a first TURBT, and others don't. I've got obstructive sleep apnea and use a CPAP machine. For the uninitiated, that involves a mask with a hose running to an air pump that raises air pressure enough to splint one's throat open at night. It prevents snoring and worse -- events where the airway closes altogether and just closes tighter when one tries to suck air through, forcing the sleeper to wake up and breathe. It's taught me to learn how to sleep on my side without rolling around much. I can sleep fine with an IV too, so I suppose I can handle the catheter. I wonder what cats think about catheters? It might be time to do some claw clipping in advance.

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12 years 4 months ago #40224 by rbmc
Replied by rbmc on topic Hello from a newbie
Hi PST. I'm impressed that the problem was identified, and you're taking such quick action. Once past the intial surgery, you'll have a better idea of the situation and how to proceed. I had to wait almost 6 weeks, and went home with the cath-bag system (male). A 10 day event, got used to it quick, but quite uncomfortable to perform the act of elimination. I wore an upper leg bag, nobody knew. Was right back to work and normal activity. Being a "tosser" I slept on the couch to stay on my back so not to tangle up the nite hoses! You're right again, BC is sneaky to return. Best of luck on your journey.
RB

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