Wilms' Tumor

bkc1
bkc1 Member Posts: 2
edited March 2014 in Childhood Cancers #1
My 6-year-old son was diagnosed with a Wilms' Tumor in 2/01 and had the affected kidney removed on 2/19. He is in the 18-week chemo treatment plan now and is doing fine, but it has been like a rollercoaster ride for us. He was mis-diagnosed in 12/00 as having a hematoma that would heal on its own. I am interested in hearing from someone who has had a child with this type kidney cancer. Thanks, JC
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Comments

  • maddyscancrfree
    maddyscancrfree Member Posts: 2
    Hello there, My name is Julie, At 13 months my daughter was dx with wilms tumor, they removed her rt kidney and she went through chemotherapy also. It was a horrible nightmare, but I can say we had her 1 YEAR CANCER FREE CELEBRATION last saturday!!! Any questions, concerns or if you need a shoulder to lean on, email me. Julie
  • holhen
    holhen Member Posts: 1
    I am a 23 year survivor of wilm's. My left kidney was removed when I was 2 yrs. and I had 18 mos. chemo and 2 wks radiation. I'm here today and doing great. If I can offer any support please let me know.
  • bkc1
    bkc1 Member Posts: 2
    holhen said:

    I am a 23 year survivor of wilm's. My left kidney was removed when I was 2 yrs. and I had 18 mos. chemo and 2 wks radiation. I'm here today and doing great. If I can offer any support please let me know.

    Thanks for the response and encouragement. You'll be happy to hear that the standard protocol for Wilms' Tumor is now 18 weeks of chemo regardless of the stage. Radiation is added if stage 3 or higher. My son has just finished his 18-wk treatment and appears to be doing fine. We will have frequent check-ups for a while I guess. I am interested in knowing your gender and what part of the country you lived in during your 1st 2-3 years of life. Do you know if your Wilms' was hereditary? Thanks for your time.
  • kanpat
    kanpat Member Posts: 4
    bkc1 said:

    Thanks for the response and encouragement. You'll be happy to hear that the standard protocol for Wilms' Tumor is now 18 weeks of chemo regardless of the stage. Radiation is added if stage 3 or higher. My son has just finished his 18-wk treatment and appears to be doing fine. We will have frequent check-ups for a while I guess. I am interested in knowing your gender and what part of the country you lived in during your 1st 2-3 years of life. Do you know if your Wilms' was hereditary? Thanks for your time.

    Just thought I would add on to your discussion for some more encouragement. I am a 26 year old Wilm's Tumor survivor. I was diagnosed when I was 18 months old. I was a stage IV, had a right-side nephrectomy, chemo and radiation. I have to tell you I have lived a very healthy life. The only long term effect of my treatment is scoliosis as a result of stunted growth on my right side.

    At the time of diagnosis, I was living in Minnesota, and the cancer is nothereditary. I am an anomaly in my family. :)

    I wish you and your son the best! Stay optimistic, and please know that what your son is going through now will only make him stronger in the long run of things.
  • charliee
    charliee Member Posts: 1

    Hello there, My name is Julie, At 13 months my daughter was dx with wilms tumor, they removed her rt kidney and she went through chemotherapy also. It was a horrible nightmare, but I can say we had her 1 YEAR CANCER FREE CELEBRATION last saturday!!! Any questions, concerns or if you need a shoulder to lean on, email me. Julie

    Hi! I just found CSN or had the courage to hear and learn more about Wilms Tumor. My son was diagnosed 9 weeks ago with bilateral wilms tumor and has started his chemotherapy ( we are on week 9) surgery has been postponed for another week or two but as far as we know it should be this month. I have been beside myself living in the day and trying not to get overwhelmed about it all..It has been tough but it helps when my little guy runs around just like he always has. I loved your email and if it is correct your daughter should be close to year 2.........I am at a loss of what to say I jsut felt it time to reach out and talk to someone that has also gone or going through this........

    saddend mother...

    thanks for listening

    stacy
  • ged
    ged Member Posts: 1
    holhen said:

    I am a 23 year survivor of wilm's. My left kidney was removed when I was 2 yrs. and I had 18 mos. chemo and 2 wks radiation. I'm here today and doing great. If I can offer any support please let me know.

    My 8 month old son was diagnosed with Wilm's tumour at 5 months of age. Since the diagnosis he has had 10 weeks of pre-op chemo, nephrectomy and is now embarking on another 24 weeks of chemo for a stage 3 favourable histology tumour. As a parent I am deeply worried about the quality of life issues that he will face should he survive the cancer. The oncologists want to administer anthracycline therapy which will cause heart damage and possibly heart failure in the future.

    Doctors tell me that most childhood survivors are glad to be alive even after extensive and aggressive treatment which has caused late effects.

    I would appreciate any views on these issues from people who have endured this type of treatment - was it worth it in the end?

    Thanks for listening - you can contact me at [email protected]

    Regards

    Ged
  • lindseyv
    lindseyv Member Posts: 6
    charliee said:

    Hi! I just found CSN or had the courage to hear and learn more about Wilms Tumor. My son was diagnosed 9 weeks ago with bilateral wilms tumor and has started his chemotherapy ( we are on week 9) surgery has been postponed for another week or two but as far as we know it should be this month. I have been beside myself living in the day and trying not to get overwhelmed about it all..It has been tough but it helps when my little guy runs around just like he always has. I loved your email and if it is correct your daughter should be close to year 2.........I am at a loss of what to say I jsut felt it time to reach out and talk to someone that has also gone or going through this........

    saddend mother...

    thanks for listening

    stacy

    I was diagnosed in '91 with Stage IV unilateral favorable histology. After a relapse and another bout with thyroid cancer, I'm still kickin' at 22. The advances have been amazing. Survival rates increase with every passing day. Check out www.nwtsg.org for the latest study info. Email me at [email protected] if you'd like.
  • VivianL
    VivianL Member Posts: 1
    charliee said:

    Hi! I just found CSN or had the courage to hear and learn more about Wilms Tumor. My son was diagnosed 9 weeks ago with bilateral wilms tumor and has started his chemotherapy ( we are on week 9) surgery has been postponed for another week or two but as far as we know it should be this month. I have been beside myself living in the day and trying not to get overwhelmed about it all..It has been tough but it helps when my little guy runs around just like he always has. I loved your email and if it is correct your daughter should be close to year 2.........I am at a loss of what to say I jsut felt it time to reach out and talk to someone that has also gone or going through this........

    saddend mother...

    thanks for listening

    stacy

    I discovered this website through a tv commercial. I thought I would take a look to find out more about Wilm's Tumor. I was diagnosed with Wilm's Tumor at 1-1/2 yrs old. The doctor who diagnosed it knew right away what it was and told my parents to take me to the hospital (100 miles away) as soon as possible. It was the middle of winter in 1962. They had to wait an extra day to travel because of a snow storm. The doctors at Ottawa General Hospital in Ottawa, Ontario, Canada, removed my right kidney (presumably as soon as possible). I have heard bits and pieces of my ordeal. I was apparently in the hospital for 6 weeks and went through radiation and chemotherapy. I am now 42 years old and no trace of cancer. I think it was a miracle that the doctor diagnosed me so quickly. I wish you all the best for you and your son. I pray for all children suffering with cancer. It is a terrible thing for a child to have to deal with. I also think I was fortunate that I was too young to know what was happening to me. Good luck and all the best to you
  • lindseyv
    lindseyv Member Posts: 6
    ged said:

    My 8 month old son was diagnosed with Wilm's tumour at 5 months of age. Since the diagnosis he has had 10 weeks of pre-op chemo, nephrectomy and is now embarking on another 24 weeks of chemo for a stage 3 favourable histology tumour. As a parent I am deeply worried about the quality of life issues that he will face should he survive the cancer. The oncologists want to administer anthracycline therapy which will cause heart damage and possibly heart failure in the future.

    Doctors tell me that most childhood survivors are glad to be alive even after extensive and aggressive treatment which has caused late effects.

    I would appreciate any views on these issues from people who have endured this type of treatment - was it worth it in the end?

    Thanks for listening - you can contact me at [email protected]

    Regards

    Ged

    I was an atypical Wilms patient, because I was 11 at diagnosis. My late effects will differ from an infant's, but I was treated not only with anthracyclines, but with cyclophasphamide upon relapse. Until now, my echos have been normal. I'm 12 years out of anthracycline therapy/radiation & 9 from cyclophasphamide. My only abnormality is a 6 mm nodule near my aortic valve. I'm on beta blockers to lower my pulse, but my BP has always been rock bottom. Barring extreme physical activities, my quality of life has been excellent. I'm done with college, getting married and pursuing medical school.
  • jaymeo
    jaymeo Member Posts: 1
    charliee said:

    Hi! I just found CSN or had the courage to hear and learn more about Wilms Tumor. My son was diagnosed 9 weeks ago with bilateral wilms tumor and has started his chemotherapy ( we are on week 9) surgery has been postponed for another week or two but as far as we know it should be this month. I have been beside myself living in the day and trying not to get overwhelmed about it all..It has been tough but it helps when my little guy runs around just like he always has. I loved your email and if it is correct your daughter should be close to year 2.........I am at a loss of what to say I jsut felt it time to reach out and talk to someone that has also gone or going through this........

    saddend mother...

    thanks for listening

    stacy

    Hi...I am the mom of a 9 month old boy who was diagnosed with a Wilm's tumor one month ago. He also has Beckwith-Wiedemann Syndrome which is an overgrowth syndrome that predisposes him to Wilm's tumors. We found it early and decided to do nephron-sparing surgery and now on week 3 of chemo. After some problems with his Broviac Catheter (2 infections following him yanking the first broviac completely out) we are now waiting to insert a portacath. I would love to hear how others deal with the frustrations of having an infant with cancer.

    Thanks,
    Jayme
  • LittleShyGirl
    LittleShyGirl Member Posts: 2

    Hello there, My name is Julie, At 13 months my daughter was dx with wilms tumor, they removed her rt kidney and she went through chemotherapy also. It was a horrible nightmare, but I can say we had her 1 YEAR CANCER FREE CELEBRATION last saturday!!! Any questions, concerns or if you need a shoulder to lean on, email me. Julie

    Julie
    Hi my name is Linda I had a wilms tumor at age 2 1/2 and now I am 32 and I have two kids of my own. But I just wanted you to know that even though your daughter is young she might go through some emotional state later on in life its like you have a delaid reaction to having cancer and deal with it after the fact. I hope she dont but just keep your eye out when she is about 13 yrs old thats about when it hit me and boy did I have all these emotions and didnt really know why and no one to talk to about them. Good luck with all you can email me on here my user name is LittleShyGirl
  • hovey
    hovey Member Posts: 3
    Hello my name is Christine. I also had wilms tumor it was in my right kidney and had spread to a major arterie when I was diagnosed. I had chemo and radiation for a year in a half. and than had a reoccurance in both of my lungs in 1980. So I went thru more treatments but have been free of this type of cancer and I am now 36. But two years ago I developed DCIS in my left breast and than invasive cancer in my right due to my radiation treatments during puberty. But now I am back to work full time and feeling very good thankfully!!!!!
  • ty512
    ty512 Member Posts: 1
    charliee said:

    Hi! I just found CSN or had the courage to hear and learn more about Wilms Tumor. My son was diagnosed 9 weeks ago with bilateral wilms tumor and has started his chemotherapy ( we are on week 9) surgery has been postponed for another week or two but as far as we know it should be this month. I have been beside myself living in the day and trying not to get overwhelmed about it all..It has been tough but it helps when my little guy runs around just like he always has. I loved your email and if it is correct your daughter should be close to year 2.........I am at a loss of what to say I jsut felt it time to reach out and talk to someone that has also gone or going through this........

    saddend mother...

    thanks for listening

    stacy

    my son was just diagnosis with stage III wilms it was too large to remove he is is undergoing 10 wks of chemo then surgery. i am very worried about his prognosis and his future. i hope your son is doing well.
  • mimi777
    mimi777 Member Posts: 1
    jaymeo said:

    Hi...I am the mom of a 9 month old boy who was diagnosed with a Wilm's tumor one month ago. He also has Beckwith-Wiedemann Syndrome which is an overgrowth syndrome that predisposes him to Wilm's tumors. We found it early and decided to do nephron-sparing surgery and now on week 3 of chemo. After some problems with his Broviac Catheter (2 infections following him yanking the first broviac completely out) we are now waiting to insert a portacath. I would love to hear how others deal with the frustrations of having an infant with cancer.

    Thanks,
    Jayme

    Hello:
    Would you tell me how your son is doing now and how you managed through the chemo etc.. G-son ( 17 mos old) just diagnosed. tumor stg 3 too large to remove, already back in hospital after ONE day at home, high fever and BP. Mom has lupus, overwhelmed. ANY info would be so appreciated. Thank you
  • kbmomanddad
    kbmomanddad Member Posts: 1
    charliee said:

    Hi! I just found CSN or had the courage to hear and learn more about Wilms Tumor. My son was diagnosed 9 weeks ago with bilateral wilms tumor and has started his chemotherapy ( we are on week 9) surgery has been postponed for another week or two but as far as we know it should be this month. I have been beside myself living in the day and trying not to get overwhelmed about it all..It has been tough but it helps when my little guy runs around just like he always has. I loved your email and if it is correct your daughter should be close to year 2.........I am at a loss of what to say I jsut felt it time to reach out and talk to someone that has also gone or going through this........

    saddend mother...

    thanks for listening

    stacy

    Stacy - we are brand new to CSN today. We're parents of a 3 yr old girl who was diagnosed with bilateral Wilms Tumor in March. She's undergone 9 chemo treatments (10th scheduled this week), and just had a 2nd CT Scan to evaluate for surgery. The first scan showed really good results, but the doctors wanted more chemo before proceeding with the surgery. Like you, we've been overwhelmed by the whole experience, and have been looking to connect with others who are going through or have gone through this - especially since bilateral WT is so uncommon. We hope you and your son and family are all doing well. Pls let us know how things are. Thanks.

    kb's mom and dad
  • lehcpa
    lehcpa Member Posts: 1
    mimi777 said:

    Hello:
    Would you tell me how your son is doing now and how you managed through the chemo etc.. G-son ( 17 mos old) just diagnosed. tumor stg 3 too large to remove, already back in hospital after ONE day at home, high fever and BP. Mom has lupus, overwhelmed. ANY info would be so appreciated. Thank you

    mimi, our two year old son was diagnosed with stage 3 wilms tumor on 4/13/2006. Drop me an email if you would like to exchange information. [email protected]
  • momofzj
    momofzj Member Posts: 1
    mimi777 said:

    Hello:
    Would you tell me how your son is doing now and how you managed through the chemo etc.. G-son ( 17 mos old) just diagnosed. tumor stg 3 too large to remove, already back in hospital after ONE day at home, high fever and BP. Mom has lupus, overwhelmed. ANY info would be so appreciated. Thank you

    Mimi, my son was diagnosed with stage 3 anaplastic Wilm's tumor 12/28/05. He just finished treatment one month ago. His tumor was originally considered inoperable due to involvement with vena cava, spot on lung and lymph involvement. All is good right now. Please feel free to PM me.
  • boosmom
    boosmom Member Posts: 3
    HEllo. MY son is 6 and we found out he had wilms tumor on dec 15/06 and had surgery dec 20/06 to remove his right kidney. We are now on the fourth chemo treatment. Please write back i have no support groups and i keep searching the net and finding good and bad things. i would really like to hear from you and would like to know how your son is doing. Thank you.
  • boosmom
    boosmom Member Posts: 3

    Hello there, My name is Julie, At 13 months my daughter was dx with wilms tumor, they removed her rt kidney and she went through chemotherapy also. It was a horrible nightmare, but I can say we had her 1 YEAR CANCER FREE CELEBRATION last saturday!!! Any questions, concerns or if you need a shoulder to lean on, email me. Julie

    Hello. i would really love to talk with you. We just found out my son has wilms tumor. He just had surgery to removed the right kidney and he has started his chemo. I was wondering if there are any other support groups for wilms tumor and to see what you have heard about wilms tumor. please email me because i would like to know how your little one is doing as well. thank you
  • boosmom
    boosmom Member Posts: 3

    Julie
    Hi my name is Linda I had a wilms tumor at age 2 1/2 and now I am 32 and I have two kids of my own. But I just wanted you to know that even though your daughter is young she might go through some emotional state later on in life its like you have a delaid reaction to having cancer and deal with it after the fact. I hope she dont but just keep your eye out when she is about 13 yrs old thats about when it hit me and boy did I have all these emotions and didnt really know why and no one to talk to about them. Good luck with all you can email me on here my user name is LittleShyGirl

    hello. i would really like to hear from you since your older and have gone through the mental stages. My son who is 6 was diagnose just reasonally and im not sure how to go about telling him about wilms tumor. Thank you