Wilms Tumor Survior

LadyJUSA
LadyJUSA Member Posts: 3
edited April 2023 in Childhood Cancers #1
Hi. I'm 25 and I was diagnosed with a wilms' tumor at the age of 4 through a series of events.

I was hospitalized for a routine appendectomy. My appendix was removed but after recovery I still had severe abdomonial pain.

I was again hospitalized and had an exploritory operation. They discoverd that my intestine had twisted and during the operation it burst.

Apon repair they had accidently discovered a tumor in my right kidney. My Kidney was removed and sent off for testing and I was later diagnosed with a wilms tumor.

I would like to hear from other Wilms' Tumor Surviors. I am interested in their stories.

Thanks.
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Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • Scott1
    Scott1 Member Posts: 2 Member
    #3
    Hello LadyJUSA,

    I'm 35. I had Wilms Tumor at age 4 as well. The tumor was ruptured when my babysitter tossed me in the air to catch me on the way down. I started crying with abdomonial pain. I was hospitalized for a appendectomy. Once in surgery the tumor was discovered in my kidney and then removed. thanks for sharing your story, I've never met or known someone that hat Wilms. I visited CSN to begin learning what to expect from the radiation as far as side effects. Radiation was part of my treatment for Wilms.
    I haven't really found answers yet, but I've just began to research.

    Be Well,
    Joe
  • B-ALIVE55
    B-ALIVE55 Member Posts: 1 Member
    #4
    Hi! Am a female in my mid-50's, a survivor of 53+ years of a Wilm's tumor that took my right kidney at age 2. It was by accident that our family doctor found it as my brother was very ill and doctor checked me over, too, and found the mass.

    No chemo in those days; after surgery and several deep X-ray treatments, I was eventually declared cancer-free. Was told I was among the youngest to have gone thru this, and that 90% of children died from this carcinoma in those days.

    However, the treatments damaged my body; hence, I was unable to have children and have several other health conditions as a result. But isn't life a trade-off sometimes?
  • lilbit63
    lilbit63 Member Posts: 5 Member
    #5
    B-ALIVE55 said:

    Hi! Am a female in my mid-50's, a survivor of 53+ years of a Wilm's tumor that took my right kidney at age 2. It was by accident that our family doctor found it as my brother was very ill and doctor checked me over, too, and found the mass.

    No chemo in those days; after surgery and several deep X-ray treatments, I was eventually declared cancer-free. Was told I was among the youngest to have gone thru this, and that 90% of children died from this carcinoma in those days.

    However, the treatments damaged my body; hence, I was unable to have children and have several other health conditions as a result. But isn't life a trade-off sometimes?

    hoping you are still checking this message board at times
    i am a 44 year old who had wilm tumor 39 years ago.
    i was not expected to live because in those days very few did.
    now although i am fortunate to have had two children i have so many medical problems
  • Aquagirl18
    Aquagirl18 Member Posts: 45
    #6
    Wilms Tumor Survivor
    Hi there
    I am 29 and when I was first diagnosed when around 13 months old and my doctors thought I had Wilm's when they discovered later that it was Neuroblastoma. I would like to hear from survivors of Wilm's tumor and Neuroblastoma.
    Thanks
  • d1o2t3
    d1o2t3 Member Posts: 1 Member
    #7
    wilms tumour survivor
    Hi LadyJUSA - I had a tumour and right kidney removed at the age of 5 years and am now 63 years old - I have 2 sons - 6 grand children and 2 great grand children - I am still healthy and active and lead an independant lifestyle - would like to hear how you are going since your post was in 2006 hope all is still well with you
  • janice17
    janice17 Member Posts: 4 Member
    #8
    lilbit63 said:

    hoping you are still checking this message board at times
    i am a 44 year old who had wilm tumor 39 years ago.
    i was not expected to live because in those days very few did.
    now although i am fortunate to have had two children i have so many medical problems

    wilms tumor
    h.i i hope you still check the board as well.l am 47 and had my left kidney removed 46 years ago. when i was 17 months old, it also was a wilms tumor. they gave me a week to live, but im still here. l also have two children but was told i would never have any. l also have lots of medical problems. hope you reply and we can share stories or just talk. thanks janice
  • megan123
    megan123 Member Posts: 1 Member
    #9
    Wilms Tumor Survivor
    Hello!
    I am 16 (almost 17) years old and I was diagnosed with wilms' tumor when I was 7 months old.
    Although I do not remember any of what happened to me, my parents and grandparents have painted pictures for me with their stories.

    I was having a check up at my local doctor and they noticed that my head was a bit larger than normal and while checking for that they found my wilms tumor.

    My right kidney was removed shortly after the consultation at Childrens Hospital.

    I went to Children's Hospital in 1993 for my chemothreapy and radiation as well however I did not lose any of my hair until after the chemo was finished.

    As I am still growing up, I am living a very healthy lifestyle. I am active and can still play sports. I cannot play contact sports though because my doctor wants to make sure nothing happens to my working left kidney.

    I still go to Childrens Hospital in Hollywood once a year, every year.

    I would love to hear from more wilm's tumor survivors, for I have never met any in my life. Thanks to everyone for sharing their stories.
  • leejcarr
    leejcarr Member Posts: 4 Member
    #10
    wilms
    I'm a 37 year survivior with many long term effects do to the treatment im wondering if you do also and what they are
  • leejcarr
    leejcarr Member Posts: 4 Member
    #11
    Scott1 said:

    Hello LadyJUSA,

    I'm 35. I had Wilms Tumor at age 4 as well. The tumor was ruptured when my babysitter tossed me in the air to catch me on the way down. I started crying with abdomonial pain. I was hospitalized for a appendectomy. Once in surgery the tumor was discovered in my kidney and then removed. thanks for sharing your story, I've never met or known someone that hat Wilms. I visited CSN to begin learning what to expect from the radiation as far as side effects. Radiation was part of my treatment for Wilms.
    I haven't really found answers yet, but I've just began to research.

    Be Well,
    Joe

    wilms
    I to am a 37 yr survivior of wilms i was a year old when i lost my kidney i suffer many many side effects cronic back pain curve spin do to radiation, depression, diabetes, hip pain that is a phantom pian so the doctors say, enlarged spleen, and more please send me some of your symptoms thank lee
  • bublrap
    bublrap Member Posts: 1 Member
    #12
    leejcarr said:

    wilms
    I'm a 37 year survivior with many long term effects do to the treatment im wondering if you do also and what they are

    wilms tumor survivor
    I was diagnosed with this cancer at 13 months old. My pediatrician felt a lump at one of my check ups as my mom has told me. My left Kidney was removed. I had chemo and lost some of my hair. Made yearly visits to the childrens hospital till i was about 13 yrs old. Then i was allowed to go to my regular doctor. I am 38 now, and have alot of medical problems. I cant have children becuz of the chemo, even tho the docs said that should not be a problem...they didnt know alot of things back then. Went thru alot of fertility treatments to no success and had to have a total hysterectomy at 34. I dont know of anyone personally with my same history. I just came across this site.
  • confused1
    confused1 Member Posts: 50
    #13
    bublrap said:

    wilms tumor survivor
    I was diagnosed with this cancer at 13 months old. My pediatrician felt a lump at one of my check ups as my mom has told me. My left Kidney was removed. I had chemo and lost some of my hair. Made yearly visits to the childrens hospital till i was about 13 yrs old. Then i was allowed to go to my regular doctor. I am 38 now, and have alot of medical problems. I cant have children becuz of the chemo, even tho the docs said that should not be a problem...they didnt know alot of things back then. Went thru alot of fertility treatments to no success and had to have a total hysterectomy at 34. I dont know of anyone personally with my same history. I just came across this site.

    Brother-in-law that had wilms
    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
  • wilms_pa
    wilms_pa Member Posts: 1 Member
    #14
    Wilms Survior
    Hey everyone, I am a 24 years old and was diagnosed with a wilms tumor at age 14 months. I don't remember anything about it and only know what my parents had told me. As the story goes I had not been voiding and "just not doing right" I think they brought me in with a fever as well. Luckily the doc that I went to had seen the exact same case 2 week prior and was pretty sure he knew what I had. They shipped me off to a children's hospital that day and had surgery the next. I underwent chemo and radiation and everything went routine.

    I had a pretty normal childhood and had no problems until about puberty when I had adhesions from the scar tissue. It took the doctors awhile to figure out what it was but eventually had them cut out. Other than that I have had no problems that could be contributed to the cancer or treatment. I have been able to play all kinds of sports growing up but currently I think I am going to try and stay away from bullfighting and kickboxing;). Overall I would say I am currently in excellent health and I love to hear from people with all kinds of stories and experiences.
  • KATLYNN
    KATLYNN Member Posts: 1 Member
    #15
    Scott1 said:

    Hello LadyJUSA,

    I'm 35. I had Wilms Tumor at age 4 as well. The tumor was ruptured when my babysitter tossed me in the air to catch me on the way down. I started crying with abdomonial pain. I was hospitalized for a appendectomy. Once in surgery the tumor was discovered in my kidney and then removed. thanks for sharing your story, I've never met or known someone that hat Wilms. I visited CSN to begin learning what to expect from the radiation as far as side effects. Radiation was part of my treatment for Wilms.
    I haven't really found answers yet, but I've just began to research.

    Be Well,
    Joe

    WILMS TUMOR SURVIVOR
    Hi Joe and all other survivors,
    I am trying to find some information for my brother who had surgery for a Wilms Tumor in 1966. He had cobalt treatments before and after the nephrectomy. 2 months ago, he had surgery to repair a fistula (abnormal hole) between his stomach and colon. Therefore, all his food was literally passing straight through him and he was suffering from malnutrition. Since the surgery-which was not successful-he has developed a hole in his stomach that is exposed to the outside and will not heal due to the radiation damage to his abdomen. He is scheduled to begin hyperbaric oxygen treatments tomorrow to help with healing.
    I'm wondering if any of you guys have experienced any problems with unhealthy bowels; malnutrition due to radiation damage and what your experience has been. I am very concerned about my brother due to the malnutrition issues.
    He is about 4'8" and weights about 63 pounds. He is 44 years old. He has double scoliosis. He has the best personality and outlook on life. He just wants to feel good again and be around his family at home. He has been in the hospital since his surgery 2 months ago.
    I would appreciate any info.
  • tesslynn32
    tesslynn32 Member Posts: 5
    #16
    bublrap said:

    wilms tumor survivor
    I was diagnosed with this cancer at 13 months old. My pediatrician felt a lump at one of my check ups as my mom has told me. My left Kidney was removed. I had chemo and lost some of my hair. Made yearly visits to the childrens hospital till i was about 13 yrs old. Then i was allowed to go to my regular doctor. I am 38 now, and have alot of medical problems. I cant have children becuz of the chemo, even tho the docs said that should not be a problem...they didnt know alot of things back then. Went thru alot of fertility treatments to no success and had to have a total hysterectomy at 34. I dont know of anyone personally with my same history. I just came across this site.

    wilms survivor
    I had wilms tumor at the age of 3 and am now 33. I have scoliosis because the chemo hit my spine. I have chronic high blood pressure due to the fact that I have only one kidney and have had the high blood pressure since age 14 and been on medication since then and am still having medical problems.
  • madaboutkale
    madaboutkale Member Posts: 5
    #17
    janice17 said:

    wilms tumor
    h.i i hope you still check the board as well.l am 47 and had my left kidney removed 46 years ago. when i was 17 months old, it also was a wilms tumor. they gave me a week to live, but im still here. l also have two children but was told i would never have any. l also have lots of medical problems. hope you reply and we can share stories or just talk. thanks janice

    Back Issues and Sciatica
    Hello,

    I had Wilm's Tumor when I was 2 years old in 1974. I had radiation, chemo and kidney removal. I haven't really had many issues until I had children. Because my body is uneven in the ribs, hips and waist (due to the radiation and kidney removal), my physical structure had a hard time carrying a child through the pregnancy. I did it twice, but I now have lower lumbar herniated discs and sciatica down one of my legs, which is debilitating. I also have some scoliosis where my right kidney was removed; my lower spine curves to my right side where my kidney would have been. My sister (a physical therapist) recently found an incredible medical book with a small chapter dedicated to a grown woman who had Wilm's tumor. They showed her body as an adult and I was astonished. The whole chapter is about how this doctor helped her realign her spine through exercises, breathing, stretches. She looked just like me. I was amazed. I guess I never thought about what other survivors looked like. Now that I'm having many physical problems with my spine, I wanted to touch base with others to see if that was a problem other Wilms tumor survivors have experienced and what helped them. I can be reached at madaboutkale@gmail.com

    - Lori
  • mean56
    mean56 Member Posts: 11 Member
    #18
    Hi all!
    I am a 53 year old
    Hi all!

    I am a 53 year old wilms survivor. I was diagnosed at birth and had my kidney removed and treatments when I was 2-3 months old. I have a vague memory of some treatments and always thought there was nothing I couldn't do. I was told that I would not have children - I have 3 & 2 grandchildren. After I read your posts, I realize I have side effects from the disease; scoliosis, uneven body, abdominal/intestinal issues - those I always knew. I did not relate my chronic depression with the disease. I can remember blowing out the candles on my birthday cake when I was 4 and wishing to be happy. The depression has been the most debilitating for me. It's an oxymoron being a "survivor/suicidal". I have worked my tail off since I was 15 doing real battle with depression. I have had tons of therapy & I knew at 15 that I must have a chemical imbalance. I have tried some anti-depressant meds (zoloft & effexor) but I am not comfortable with the lack of knowledge of depression. It's frustrating - but if depression is a true side effect of the willms tumor battle, we might be on to something. I would love to hear what you all have to say about this side effect, especially success stories! I am proud to be a survivor - just so tired of the depression battle!
  • karlaanne
    karlaanne Member Posts: 7
    #19
    lilbit63 said:

    hoping you are still checking this message board at times
    i am a 44 year old who had wilm tumor 39 years ago.
    i was not expected to live because in those days very few did.
    now although i am fortunate to have had two children i have so many medical problems

    did you have any lifting restrictions set upon you because of the stress it would put on your heart? my daughter has a 30 lb weight limit that she can carry... just looking ahead for her. she was 4 when she was diagonsed with wilms tumor and now 17 whats ahead for her... thanks
  • karlaanne
    karlaanne Member Posts: 7
    #20
    madaboutkale said:

    Back Issues and Sciatica
    Hello,

    I had Wilm's Tumor when I was 2 years old in 1974. I had radiation, chemo and kidney removal. I haven't really had many issues until I had children. Because my body is uneven in the ribs, hips and waist (due to the radiation and kidney removal), my physical structure had a hard time carrying a child through the pregnancy. I did it twice, but I now have lower lumbar herniated discs and sciatica down one of my legs, which is debilitating. I also have some scoliosis where my right kidney was removed; my lower spine curves to my right side where my kidney would have been. My sister (a physical therapist) recently found an incredible medical book with a small chapter dedicated to a grown woman who had Wilm's tumor. They showed her body as an adult and I was astonished. The whole chapter is about how this doctor helped her realign her spine through exercises, breathing, stretches. She looked just like me. I was amazed. I guess I never thought about what other survivors looked like. Now that I'm having many physical problems with my spine, I wanted to touch base with others to see if that was a problem other Wilms tumor survivors have experienced and what helped them. I can be reached at madaboutkale@gmail.com

    - Lori

    spine
    Lori,
    I am courious did you have the curviture in your spine before kids? my daughter is 17, a wilms surviver, they took her kidney and also had radition treatment.... she has a curve in her spine and after seeing an othopedic surgeon she was told that she was done growing and that her spine will not change anymore; being that I work with PT's and see patients coming in with spine issues I worry that my daughter if she does have kids will have the same issues that you are experiencing.... ugh! I wish that I could know what to do or ask when we see her doctors. I love this site and being able to talk to people going through the same things. did you have restrictions growing up? weight limit due to stress on heart? I too am interested in others that have or are going through same... thanks and good luck Lori
  • karlaanne
    karlaanne Member Posts: 7
    #21
    megan123 said:

    Wilms Tumor Survivor
    Hello!
    I am 16 (almost 17) years old and I was diagnosed with wilms' tumor when I was 7 months old.
    Although I do not remember any of what happened to me, my parents and grandparents have painted pictures for me with their stories.

    I was having a check up at my local doctor and they noticed that my head was a bit larger than normal and while checking for that they found my wilms tumor.

    My right kidney was removed shortly after the consultation at Childrens Hospital.

    I went to Children's Hospital in 1993 for my chemothreapy and radiation as well however I did not lose any of my hair until after the chemo was finished.

    As I am still growing up, I am living a very healthy lifestyle. I am active and can still play sports. I cannot play contact sports though because my doctor wants to make sure nothing happens to my working left kidney.

    I still go to Childrens Hospital in Hollywood once a year, every year.

    I would love to hear from more wilm's tumor survivors, for I have never met any in my life. Thanks to everyone for sharing their stories.

    I would love for you to talk
    I would love for you to talk with my daughter who is now 17 and was 4 when she was diagnosed with wilms. It would be great to connect with girls who are going through what she is. do you have facebook? email me at karkar4068@Yahoo.com if interested in connecting with her. thanks!

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