Home Forums All Categories Muscle Invasive Bladder Cancer New user with bag since he was 9

  • New user with bag since he was 9

    Posted by Cynthia on August 5, 2010 at 10:57 pm

    Welcome I do not know if you lost your bladder to cancer or not but you are welcome here either way. I am moving your post to a new thread so it will get more attention. If you need any help just email me by clicking on contact us in the main menu and I will try to help.


    Cynthia Kinsella
    T2 g3 CIS 8/04
    Clinical Trial
    Chemotherapy & Radiation 10/04-12/04
    Chemotherapy 3/05-5/05
    BCG 9/05-1-06
    RC w/umbilical Indiana pouch 5/06
    Left Nephrectomy 1/09
    President American Bladder Cancer Society
    Babsiebob replied 14 years, 5 months ago 7 Members · 11 Replies
  • 11 Replies
  • babsiebob's avatar

    babsiebob

    Member
    September 4, 2010 at 3:28 pm

    welcome aboard, what a story you have to tell, good luck
    Barbara


    Dx 4-28-08
    pT3a no mo
    Rc with Ileal Conduit on 6-09-08
    2nd surgery on 6-27-09 for ureter leak
    Renal failure on 7-01-09 nephy tube and then stent on 7-09-09
    so far so good
  • jmco12's avatar

    jmco12

    Member
    August 12, 2010 at 12:37 am

    thanks Nancy, talk to you later. Joey

  • nix's avatar

    nix

    Member
    August 11, 2010 at 9:47 pm

    Joey,
    What a wonderful addition to our family! Already, you have brought hope and caring. Welcome!
    Nancy


    Nancy S
    Ta CIS
    dx Ta 11/06
    dx Ta CIS 10/07
  • jmco12's avatar

    jmco12

    Member
    August 11, 2010 at 8:39 pm

    thanks everyone, of course it wasn’t easy, and I didn’t make it through it alone, but I DID BEAT IT! and I want to be able to encourage others during their battles. I’m volunteering with the American Cancer Society and Gilda’s Club, both of which are fantastic organizations. I look forward to the day when we can all be cancer free.
    Stay strong and remember to laugh, and if no one else has told you today… I love you. Later, Joey

  • rhea's avatar

    rhea

    Member
    August 9, 2010 at 2:29 am

    Joey, I admire your strength and success of being cancer free. That is so wonderful that you are pursuing a career to help others in the same situation. welcome, Rhea

  • melodie's avatar

    melodie

    Member
    August 8, 2010 at 11:12 pm

    Joey,

    We are blessed to have you join us. I did not realize anyone that young could get bladder cancer and I can’t imagine how trying it must have been for you and your family, receiving such a dx. You obviously have come a long way and I appreciate your courage. God bless you.


    Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
  • 's avatar

    Guest
    August 7, 2010 at 12:00 am

    Joey..thats one unfair nasty disease for children and it usually hits ones under 10 yrs of age. I’m so glad for your success story and it has to be one of the best ones as they’ve come a long way in 20yrs..not far enough. Children should not be allowed to get any kind of sickness.
    pat

  • jmco12's avatar

    jmco12

    Member
    August 6, 2010 at 10:38 pm

    Thanks everyone, So, I was nine when I was diagnosed with Rhabdomyasarcoma(bladder cancer) I had my bladder and prostate removed and was given a urostomy and 18 months chemo. which were both successful. I had to have a corrective follow-up in which I chose an illeal loop urostomy rather than self-cath. I had an interesting childhood and even more interesting teen years. Long story short(for now)I made it and am happy and healthy. I didn’t do it alone and in realizing that fact I am offering my support to anyone who needs it.

  • melodie's avatar

    melodie

    Member
    August 6, 2010 at 6:48 pm

    Yes, welcome, Joey. We would love to hear your story. I have an Indy pouch and have adjusted extremely well but I’m nearing 60 and had 56 years of use from the God given bladder. I can’t imagine having to make that kind of adjustment with the intestines at age 9 but apparently you have done very well. I wait to hear the details. Please share. I’m sure you will be an inspiration to us all.


    Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
  • 's avatar

    Guest
    August 5, 2010 at 11:16 pm

    Hi Joey..and WElcome and i’d love to hear your story. I wonder if its similar to my little neighbor girl who was born with spina bifida ..quite severe. Things have come a long way…she just got rid of her indwelling cath and all the ensuing infections because of it and got an Indiana Pouch with a naval stoma which she can self cath herself very easily…and she’s just amazing. She recovered a whole lot faster than i did!
    Pat

  • cynthia's avatar

    cynthia

    Administrator
    August 5, 2010 at 11:04 pm

    Re:New bag man needs support. 38 Minutes ago

    So, I just found this site, I guess I knew that something like this was here but… I got my bag when I was 9, I’m now 33 and well used to it, but it was hard during the teen years. I’m trying to get a social work dgree and work with cancer patients, so I’m familiarizing myself with sites like this. I noticed that it has been a while since anyone has posted here, but I thought I would give it a shot. I would be happy to go into more detail about “my story” if anyone is interested, but for now just know that it’s not as bad as it seems at first, and just like so many other things our bodies AND minds will get used to almost anything. Whether you like it or not, you just got another friend! Hope to talk to you soon, Joey


    Cynthia Kinsella
    T2 g3 CIS 8/04
    Clinical Trial
    Chemotherapy & Radiation 10/04-12/04
    Chemotherapy 3/05-5/05
    BCG 9/05-1-06
    RC w/umbilical Indiana pouch 5/06
    Left Nephrectomy 1/09
    President American Bladder Cancer Society

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