survivor of Wilm's Tumor

LMGirl924
LMGirl924 Member Posts: 2
edited March 2014 in Childhood Cancers #1
Hi. My name is Leslie and i am a survior of Wilm's Tumor. I was diagnosed at when I was 10 months old and given only a few months to live. Eventhough the tumor was the size of a grapefruit, my parents never gave up on me and went through every possible resource to save my life. I had two major surgeries which removed all of my right kidney and one third of my left one. I also went through chemo, and radiation. I am now 20 years old and have been in remission for 18 years. My mother also had Wilm's Tumor. She was diagnosed when she was 5 and she is now 48. If I can give any advice to anyone, it would be that cancer is not a death sentence and miracles do happen. Don't ever give up.

Comments

  • JSMCC
    JSMCC Member Posts: 1
    #2
    My name is Jodeph. I also had Wilm's as a child. I was 6 years old. I'm now 32 and have had no real health problems since. I am am interested in finding out what to look for though. My biggest concern in the radiation. Lateley I've had some problems that I think may be related to effects from the radiation. The doctors I've been seeing don't seem to know allot about it. Have you learned any information as to what long term affects could take place?
  • lindazame
    lindazame Member Posts: 46
    #3
    Hi all,
    There are some recent additions to resources for long term survivors of childhood/adolescent cancers. The most recent are the guidelines for follow-up care posted on September 30th on the Children's Oncology Group web page. Here is the URL.
    http://www.childrensoncologygroup.org/disc/LE/default.ht

    You can use the guidelines to monitor what late effects you should be concerned about based on the treatment you had.

    You can also always join the long term discussion list at ACOR.org, click on mailing lists and look for the LTS list. There are many long term survivors of Wilm's tumors there who can help with this question.

    Hope this helps,
    Linda Zame
    zame@earthlink.net
  • auntb950
    auntb950 Member Posts: 4
    #4
    Hi Leslie, I am a 47 year survivor of Wilms having it in 1956. The information in the post by Linda Zame would be very beneficial for you and your mother to learn about possible late-effects. I hope you will join us at the long-term survivors list at www.acor.org You may read my story on my personal website at www.homestead.com/brenspages Bren H.
  • bodishcats
    bodishcats Member Posts: 2
    #5
    Hi Leslie,
    I just wanted to thank you for your message - my 2 yr 5 month old daughter was diagnosed with Wilm's tumor on 10/15/04 and the news was devastating. She has been the most healthy, robust child I have ever known. She just had a biopsy of both kidneys 5 days ago and is about to undergo chemo in 2 days. I'm scared for her - I love her so much - I can't lose her! Thanks for your inspiring message. I really need to hear about experiene like yours.
    God Bless You! Anne

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