Home Forums All Categories Newly Diagnosed, New To The Forum Newly diagnosed and happy that this site is here.

  • Newly diagnosed and happy that this site is here.

    Posted by mwestport on July 21, 2012 at 1:46 am

    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?

    upnorth replied 11 years, 11 months ago 7 Members · 10 Replies
  • 10 Replies
  • upnorth

    Member
    July 23, 2012 at 4:48 pm

    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} :)
  • Joey

    Member
    July 23, 2012 at 4:46 pm

    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

  • nix

    Member
    July 23, 2012 at 12:02 pm

    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
  • Mwestport

    Member
    July 23, 2012 at 8:22 am

    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

  • Mwestport

    Member
    July 23, 2012 at 8:15 am

    Hi Anita, I missed the chat room but will check in next time. I am in Boston. Nice to hear from you all.
    Kevin

  • Mwestport

    Member
    July 23, 2012 at 8:13 am

    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

  • mmc

    Member
    July 21, 2012 at 4:13 am

    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.
  • dougg

    Member
    July 21, 2012 at 3:26 am

    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
  • upnorth

    Member
    July 21, 2012 at 2:32 am

    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} :)
  • catherineh

    Member
    July 21, 2012 at 2:18 am

    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

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

Log in to reply.