Adults that had Wilms Tumor as a child

Elizabeth2009
Elizabeth2009 Member Posts: 2
edited January 17 in Childhood Cancers #1
Hello
My name is Elizabeth and i am looking for anyone else, who had wilms tumor as a child or know anyone that did? I am 28 years old right now, I have been cancer free for 22 years.
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Comments

  • janice17
    janice17 Member Posts: 4
    Wilms tumor penpal
    Hello Elizabeth. My name is Janice and l to had cancer as a child. When l was 17 months old, thedoctors removed my left kidney dur to a wilms tumor. I am 47 years old and that was 45 years ago. Please mail me back and we can share storys, l have never talked to anyone who has had this same cancer. l am still cancer free, its good to hear you are the same.
  • confused1
    confused1 Member Posts: 50
    janice17 said:

    Wilms tumor penpal
    Hello Elizabeth. My name is Janice and l to had cancer as a child. When l was 17 months old, thedoctors removed my left kidney dur to a wilms tumor. I am 47 years old and that was 45 years ago. Please mail me back and we can share storys, l have never talked to anyone who has had this same cancer. l am still cancer free, its good to hear you are the same.

    My Brother in law.
    I have a brother-in-law that had Wilm's. When he was 3 yrs. old. And he is 37 yrs. old now. I don't no exactly the whole story but he has a pretty good scare across his belly. And he only has only one kIdney. But he hasn't had any problem's that I no of. So here is another survior story. I have stage 4 colon cancer my self and I just turned 50 yrs. old. And I can't even imagine a small child having to experience anything that I have. It is so sad when it is children . HUG'S to u all Take Care Colleen
  • kelly_p
    kelly_p Member Posts: 1
    hi Elizabeth
    My name is Kelly and I had Wilms tumor when I was 5. I am 30 years old now and I have plenty to talk about. I went to a camp for kids with cancer and have met many people who survived the same cancer. Now that I am an adult I would love to talk to someone who can relate and see how it has effected your adult life. I would love to share stories with you. I am in Arizona, where are you?
  • elle17
    elle17 Member Posts: 1
    26 year Wilms' Survivor
    Hi Elizabeth-
    My name is Ellie and I was treated for a Wilms' tumor when I was 5. I am 31 now and I know one other person who has had a Wilms' tumor. Feel free to email me if you want!
    Ellie
    St. Paul, MN
  • bfredrickson
    bfredrickson Member Posts: 3
    Wilms
    I'm a mother of a 23 year daughter she was 5yrs, stage 4 and unfavorable histology she got married last year and found out for sure, she was infertile,and was diagnosed with pulmonary hypertension.She does have 2 leaky heart valves do to a lot of radiation.No medication at this time ,they will check her every year.Hope all is well Brenda
  • RRomas89
    RRomas89 Member Posts: 1
    Hi Elizabeth!
    I too had a

    Hi Elizabeth!

    I too had a Wilms tumor. I was diagnosed when I was 4 years old, I had chemo and radiation and they had to remove my left kidney. My friends refer to my right as "Uno." I will be 24 in September. Good to see some others out there talking about this... when I looked up some stats for a presentation in my undergrad I saw that 1 in 8million children are diagnosed with Wilms tumor. Not sure how accurate that is now. Are you part of the National Wilms Tumor study?
  • tesslynn32
    tesslynn32 Member Posts: 5
    Wilms tumor
    Hi Elizabeth, my name is Jessica. I am 33 years old and was diagnosed at the age of 3 with Wilms tumor and have been cancer free for 30 years. I would love to talk to you, you can reply here or you can e-mail me at [email protected]

    Jessica
  • This comment has been removed by the Moderator
  • mrlongtooth
    mrlongtooth Member Posts: 1
    Survivor
    Hello
    My name is Antonio. I am new to this site, and also interested in making contact with adult survivors of wilms tumor. I had a nephrectomy, chemo, and radiation treatment when I was 3 years old. I have been cancer free for 31 years. I am relatively healthy, but much like others here, continue to have back and hip pain. I am used to physical pain, as it has been there my whole life. The thing I have found to be most challenging has been emotional/mental/spiritual. I have dealt with depression through most of my young life. Though I am glad to say I hadn't had any symptoms of depression in the last ten years, I have recently endured some difficult challenges that have pushed back into depression. I am familiar with this condition and know where to get the help I need, but it has been surprising and disappointing to see that I STILL have to face difficulties that relate to having had cancer as a child.
  • lululove
    lululove Member Posts: 1

    Survivor
    Hello
    My name is Antonio. I am new to this site, and also interested in making contact with adult survivors of wilms tumor. I had a nephrectomy, chemo, and radiation treatment when I was 3 years old. I have been cancer free for 31 years. I am relatively healthy, but much like others here, continue to have back and hip pain. I am used to physical pain, as it has been there my whole life. The thing I have found to be most challenging has been emotional/mental/spiritual. I have dealt with depression through most of my young life. Though I am glad to say I hadn't had any symptoms of depression in the last ten years, I have recently endured some difficult challenges that have pushed back into depression. I am familiar with this condition and know where to get the help I need, but it has been surprising and disappointing to see that I STILL have to face difficulties that relate to having had cancer as a child.

    My wilms story
    Hi there all,
    I had Wilms Tumor stage IV as a child aged three, which resulted in a left neprhectomy. After radiotherapy and chemotherapy it spread to my lungs where I had further radiotherapy and chemo. Around 15 years later I became very short of breath (tho was always breathless post treatment) and after several years of misdiagnosis I was told I had developed pulmonary fibrosis. The docs think this was due to the radiotherapy I had to my chest area all those years back. I was told I had a year to live if I did not get a life saving lung transplant. I was immediately put on 24 hour oxygen therapy and strongly advised to keep away from potential germs: crowds, shopping centres, doctors surgeries were a 'no no'. I became wheelchair bound and wholly dependent on my mother for bathing, dressing, speaking on my behalf...One transplant centre rejected me after months of application as they feared I would not make the op and there were concerns regarding cardiomyopathy I had from the cancer treatment and whether the lungs were stuck to my chest wall due to the radiotherapy. Luckily a transplant centre placed me on their urgent list and nine months later I received a single lung transplant thanks to my donor and their family. The op wasn't wholly successful, my lung function is a mere 25%, I developed PTLD (Post Transplant Lymphoproliferative Disease) last year and heart failure. I was on chemo to reduce the tumours in my liver and native lung. My life expectancy is short now but I feel very blessed. Prior to being ill I was a successful primary school teacher and part time travel consultant. I will not be able to have children which saddens me but I can give in other ways. i do a lot of fundraising and promote awareness about organ donation and transplantation. At 29 I feel like a lot of my years have been taken away from me, wrapped up in medical procedures an d diagnoses but for some reason, I am still here to tell the tale. I like to live for the moment and look on the bright side of life!!!

    I was told I would have an early menopause...as yet this has not happened (despite everything else) but I wondered if any other Wilms' adult survivors have experienced this?
  • dnkaps8
    dnkaps8 Member Posts: 2
    Wilms Long term effects - foot pain
    My little boy was diagnosed with Wilms when he was 16 months old. He had his kidney removed and went through chemo. He is now 8. For the past year he has had terrible foot problems. His feet always hurt, primarily in the heel and back of his foot. He can't seem to walk for very long without major pain. He has begun "slapping" his feet when he walks - just lifting up the whole foot instead of rolling it. I was wondering if any long term survivors experienced this kind of pain and if it could be related to chemo. He was on vincristine and actinomycin.
  • DulaEllis
    DulaEllis Member Posts: 2
    dnkaps8 said:

    Wilms Long term effects - foot pain
    My little boy was diagnosed with Wilms when he was 16 months old. He had his kidney removed and went through chemo. He is now 8. For the past year he has had terrible foot problems. His feet always hurt, primarily in the heel and back of his foot. He can't seem to walk for very long without major pain. He has begun "slapping" his feet when he walks - just lifting up the whole foot instead of rolling it. I was wondering if any long term survivors experienced this kind of pain and if it could be related to chemo. He was on vincristine and actinomycin.

    Having Children after Childhood Wilms Tumor
    I was just wondering if any of you have children? I'm 19, I had a Wilms Tumor in my left kindey when I was three. THe kidney was removed.. I'm 16years in remission.. But again, do any of you have children? Im begining to doubt that I am able to have any children.. :( Just looking for some hope.
  • madaboutkale
    madaboutkale Member Posts: 5
    DulaEllis said:

    Having Children after Childhood Wilms Tumor
    I was just wondering if any of you have children? I'm 19, I had a Wilms Tumor in my left kindey when I was three. THe kidney was removed.. I'm 16years in remission.. But again, do any of you have children? Im begining to doubt that I am able to have any children.. :( Just looking for some hope.

    Having Children after Wilm's Tumor
    I was told that I would never have children from the chemo and radiation I received when I was younger. And I have had no problem getting pregnant. I have successfully had two children in my mid 30s. Also, almost all of the Wilm's tumor survivors I've spoken to have had very little problems in this area. So, I wouldn't count yourself out. :) Good luck with everything!
  • YDH
    YDH Member Posts: 3
    DulaEllis said:

    Having Children after Childhood Wilms Tumor
    I was just wondering if any of you have children? I'm 19, I had a Wilms Tumor in my left kindey when I was three. THe kidney was removed.. I'm 16years in remission.. But again, do any of you have children? Im begining to doubt that I am able to have any children.. :( Just looking for some hope.

    Having Children after Wilm's
    Hi

    I am new to this discussion group, but I wanted to comment to you regarding having children. I am 46 years old, I had my left kidney removed due to Wilm's tumor when I was 3 years old. I have 2 children now, my daughter is 20 and my son is 18. I had some problem carrying my daughter because of my body structure from the cancer and radiation, but she came out healthy. When I became pregnant with my son, I had no problems what so ever. Don't give up hope! :)
  • zumomma
    zumomma Member Posts: 6
    DulaEllis said:

    Having Children after Childhood Wilms Tumor
    I was just wondering if any of you have children? I'm 19, I had a Wilms Tumor in my left kindey when I was three. THe kidney was removed.. I'm 16years in remission.. But again, do any of you have children? Im begining to doubt that I am able to have any children.. :( Just looking for some hope.

    having children after WT
    Hello
    I am a long term WT survivor and have had 6 children. All were born early, including 2 micro preemies who did not survive. All of my children are "normal" (lol) and healthy.
    getting pregnant was not the problem, but I did have quite a few complications. I am quite a bit older than you and treatments have changed a great deal. I would encourage you to look into the pregnancy study done by the NWTS. Pat Norkool, in the Seattle NWTS office, is a wonderful resource person and can help you find any info available regarding the pregnancy studies. You can get her contact info and I think read the pregnancy study on the Nat'l wilm's tumor study website. I don't want to misquote any statistics, but there seem to be more problems with carrying to term than in conceiving. After my first 2 pregnancies, I had a procedure called a cervical cerclage to help prevent preterm labor. This enabled me to carry my other 4 children to 34-37 weeks.

    You are wise to be seeking info now and yes, there IS hope! Don't be afriad to ask lots of questions-and keep asking different people until you feel you have a sufficient answer.

    HTH,
    Zumomma
  • mroyal60
    mroyal60 Member Posts: 12 Member
    janice17 said:

    Wilms tumor penpal
    Hello Elizabeth. My name is Janice and l to had cancer as a child. When l was 17 months old, thedoctors removed my left kidney dur to a wilms tumor. I am 47 years old and that was 45 years ago. Please mail me back and we can share storys, l have never talked to anyone who has had this same cancer. l am still cancer free, its good to hear you are the same.


  • charliesgirl13
    charliesgirl13 Member Posts: 1

    Survivor
    Hello
    My name is Antonio. I am new to this site, and also interested in making contact with adult survivors of wilms tumor. I had a nephrectomy, chemo, and radiation treatment when I was 3 years old. I have been cancer free for 31 years. I am relatively healthy, but much like others here, continue to have back and hip pain. I am used to physical pain, as it has been there my whole life. The thing I have found to be most challenging has been emotional/mental/spiritual. I have dealt with depression through most of my young life. Though I am glad to say I hadn't had any symptoms of depression in the last ten years, I have recently endured some difficult challenges that have pushed back into depression. I am familiar with this condition and know where to get the help I need, but it has been surprising and disappointing to see that I STILL have to face difficulties that relate to having had cancer as a child.

    hey Antonio
    My name is Jenny...I had wilms when I was 4 months old. I went through chemo and radiation for a few years. I am healthy today. I do suffer for kidney pain if I drink too much. The reason I'm writing is because I've suffered with depression all my life and anger with god...do you know if that's normal for our type of trauma. I never put it together until I read your post. Feel free to respond. Hope you enjoyed your thanksgiving.
  • Nathanial
    Nathanial Member Posts: 2
    29 year surviver
    I had Whilms tumer and an non Hogkins cancer tumer I was born with when I was young. I now am cancer free for 29 years its been a long 29 years and a varey hard road as you well know. I also have had some varey odd problems growing up like poleps in my colen multiple hurneas and bone and tendin problems but have servived all. And I am a member of the Nathanial Wilms Tumer Study groop They give a lot of good advice if you are looking for infermation or help. But I do have a we one she ig going to be 8 months old on the 9th of may. So that is fun but If you have any questions or need to talk to some one that has been in the same shoes shoot a email at [email protected] and I will try to help or talk to ya.
  • Nathanial
    Nathanial Member Posts: 2
    DulaEllis said:

    Having Children after Childhood Wilms Tumor
    I was just wondering if any of you have children? I'm 19, I had a Wilms Tumor in my left kindey when I was three. THe kidney was removed.. I'm 16years in remission.. But again, do any of you have children? Im begining to doubt that I am able to have any children.. :( Just looking for some hope.

    To Dula Ellis
    My name Is Nathanial I do have a varey wonderfull little gril and I was told that I would not ever be a fother do to the mast tretment that I had well doc the jock is on you I adaped and over came the odds and now have a we one and keep up hope. Dula you will be able to have a we one some day the doc's are not allways right they gave me 6 months to live and 29 years later at the age of 31 going on 32 in a week im still kikeing and loveing haveing my little gril that is still healthey and going strong. if you need some one to talk to just email me at [email protected] and I will reply to any question you may have. thank you and keep up hope.
  • cinta
    cinta Member Posts: 1
    YDH said:

    Having Children after Wilm's
    Hi

    I am new to this discussion group, but I wanted to comment to you regarding having children. I am 46 years old, I had my left kidney removed due to Wilm's tumor when I was 3 years old. I have 2 children now, my daughter is 20 and my son is 18. I had some problem carrying my daughter because of my body structure from the cancer and radiation, but she came out healthy. When I became pregnant with my son, I had no problems what so ever. Don't give up hope! :)

    Is it still possible for me to conceive?
    Hi

    I had wilms tumor when I was 7 years old and had my left kidney removed. I am now 21 and just got married in January of this year. My husband and I have been trying to conceive. Im starting to think I cant have any kids. Is it still possible to conceive?