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Newly diagnosed and happy that this site is here.
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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10 Replies
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Only 24 hours to go Kevin. :)
See things are looking up already!
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} :)
Hi Kevin I had one recurrence of CIS within 5 months after initial dx of TA low grade. I was DX in December 2007 and the recur was May 2008. Some 30 BCG treatments later,I have not had another recurrence and am doing fine with my next 6 month follow up in December. It has been tough at times for a short period of time but well worth it based on results.
Joey
Hi Kevin,
Sorry you had to meet us under the circumstances, but you will find so much information here, soon you will know what to expect and how to be your best advocate with Bladder Cancer.
I also had CIS and was so scared when I heard the word! I started out with Ta and a year later it was CIS.
My Uro and I started BCG, as Mike said that is very effective for CIS. After 24 BCG washes, I am going for my 5 years check up in Aug. :)
We are here to help you when you have questions, and believe me, I had lots of questions.
Just take a deep breath and continue to learn all you can, we are all still learning.
Good Luck,
Nancy
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07
HI Mike,
I’ve only gone out 2 times with this thing. It is freaky to walk around with an open sphincter. Poor thing keep trying to clam up. Might get better with practice but why bother. I wrote off the whole week when I heard about this. Beats the bleeding and hasn’t been as bad as I thought it would be. Looking forward to getting a treatment plan. The Tragedy in Colorado sure threw some perspective on my situation. Talk to you soon.
Kevin
Hi Anita, I missed the chat room but will check in next time. I am in Boston. Nice to hear from you all.
Kevin
Hi mark,
I am using the time for study and lots and lots of movies. Can’t wait for Tuesday to have this Foley removed.
Kevin
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
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
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} :)
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… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TNSign In to reply.