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Newly diagnosed and happy that this site is here.

6 years 11 months ago #42531 by mmc
Kevin

Glad you found us. Sorry you needed to but glad you did. Be sure to use lots of lube stuff on that catheter. That's like the worst part. You can get a leg bag to use to go out but I sure wouldn't recommend running around town with a night sized bag. You will wind up in one of those "people of Walmart".

You will more than likely be treated with BCG. That is very successful for CIS. That is what I had but I had problems with BCG. that was back in 2006. Study up on that.

Ask questions and just know that this is very treatable! Do some research on Dr. Lamm. He has done tremendous research on BCG and his treatment protocol is the gold standard. CIS Is always high grade and is very aggressive so no messing around with this. Stay on top of this, always follow up with your uro, and follow the maintenance protocol.

All the best!

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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6 years 11 months ago #42529 by DougG
Welcome, Kevin.

Glad you found this site. Please consider joining us in the chat room on Sunday evening at 8 PM EST. There will be a number of survivors/caregivers on for an hour. In the meantime, hope you feel better. Where are you located? We are in Oak Ridge, TN. The waiting and the unknown are definitely difficult.

Best wishes,
Anita

Anita
Forum Moderator
Caregiver

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6 years 11 months ago #42528 by upnorth
Kevin, Welcome.

Glad to hear you have the bleeding under control. I know what you mean by hating the catheter. I found that if I slept in my recliner I could get a small amount of comfort at that angle. Remember to drink lots of water it helps speed the healing process up.

And hey if you don't want to go outside, you can always come on here and do some studying for your next visit to the doctor. You will also want to start a diary of what was done, at what hospital,on what date, and by whom.

We are here if you need us.

Mark

Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
"Please don't cry because it is over..... Smile because it happened!" {Dr. Seuss} :)

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6 years 11 months ago #42527 by CatherineH
Hello Kevin... welcome and we are very happy you have found us. The shock of getting a BC diagnosis is something that is universal here. I'm sorry you've had such adverse complications but it seems you are getting back on track. I hope your appointment on Tuesday goes well.

For your profile: Top of page on Main Menu > Community > My Profile Page > Edit My Profile

Hope this helps!

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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6 years 11 months ago #42526 by mwestport
My name is Kevin and I glad this site is here. I was diagnosed with a bladder tumor about a month ago after and ultrasound and a scope. I had a turbt in July 5th where they discovered CIS in 3 areas of my bladder and removed the tumor. I had a ruff recovery and began passing nearly total blood. I wound up in the ER last weekend with bleeding and clots and hcrt of 29. After 2 days I am home with a Foley for a week. the bleeding is finally slowed. I am more comfortable that I was at first but I am finding it difficult to be out side with the catheter. Seems like my sphincter tries to clamp up in public and refuses to realize that it is on "vacation". I am just staying home with the night bag until I am free on Tuesday. I have a treatment planing meeting with my Dr/ on August 7 and will learn where we go from here.

Of course this has been a great deal to take in. Waiting from appointment to appointment to hear more and more information is hard. The CIS was a bad shock. It is hard to try not to get totally caught up in this process and live at the same time. Reading everybody's posts has been a great help and comfort. Talk with you all again soon. Oh, one dumb question. How do you edit your profile on this site?

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