35 year survivor of Wilms Tumor of the kidney

joseph38
joseph38 Member Posts: 5 Member
edited March 2014 in Childhood Cancers #1
Hello Everyone I am a 35 year survivor of wilms tumor. I lost my left kidney to cancer when I was 2 1/2 years old. I am 38 years old & doing great. Just to give everyone a little back ground info. My folks where not told in 1968 on what stage my tumor was in. In fact the local hospital on where I was treated didnt even have a support group for my folks to go to. I did have side effects from the post cancer treatments. I had 2 major back operations in 1979 & one in 1980 to correct on what had happend in 1968.
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Comments

  • photoman
    photoman Member Posts: 4
    #2
    Hello Joseph,

    This November will be 40 years since my Wilm's Tumor diagnosis. Man it's hard to believe! Time is flying by!

    I was diagnosed at age 3 and my right kidney was removed. I then went to M.D.Anderson for chemo and radiation treatment. I too have had back problems related to the radiation treatment but nothing so severe that required surgery.

    In 1998 I did have to go back to M.D.Anderson for surgical removal of a benign tumor on my spine. I'm sure it's related to the my cancer history, either genetics or from the treatments I received. Who knows?

    David
  • joseph38
    joseph38 Member Posts: 5 Member
    #3
    photoman said:

    Hello Joseph,

    This November will be 40 years since my Wilm's Tumor diagnosis. Man it's hard to believe! Time is flying by!

    I was diagnosed at age 3 and my right kidney was removed. I then went to M.D.Anderson for chemo and radiation treatment. I too have had back problems related to the radiation treatment but nothing so severe that required surgery.

    In 1998 I did have to go back to M.D.Anderson for surgical removal of a benign tumor on my spine. I'm sure it's related to the my cancer history, either genetics or from the treatments I received. Who knows?

    David

    Thankyou David for responding. So far so good as far as the kidney goes. Yes when they beamed it into me in 1968 it hit 4 vertrebra killing them instanlty. I was growing from the neck down & tail bone up. Turning the 4 vertrebra inward. Thats the reason for the back operations. Again thankyou David for responding
  • auntb950
    auntb950 Member Posts: 4
    #4
    Hi Joseph, I am a 48-year survivor of Wilms tumor having it in 1956 at age 11 months. I also have late effects from my radiation treatments. There are some long-term Wilms survivors on a discussion group on www.acor.org if you'd like to join us. We are long-term survivors of all kinds of cancer, adult and childhood. Many are 20 years or more after treatment. You can find our LT-Survivor's list by clicking "mailing list" on the main site at ACOR, then find our list under "L" of the alphabet. We'd be happy to have you join us there if you'd like. Bren
  • lala1121
    lala1121 Member Posts: 1
    #5
    hi. i'm doing a cancer research project for my health class and for part of the project we have to interview a survivor of the particular type of cancer that we chose. and i chose wilm's tumor and i was hoping that you would be willing to be interviewed online.
    anyways,
    thank you.
    lara
  • tegawega
    tegawega Member Posts: 1
    #6
    lala1121 said:

    hi. i'm doing a cancer research project for my health class and for part of the project we have to interview a survivor of the particular type of cancer that we chose. and i chose wilm's tumor and i was hoping that you would be willing to be interviewed online.
    anyways,
    thank you.
    lara

    hi i was diagnosed when i was 18mos. ihad my left kidney removed then a lobe from my lung numerous radiation and chemo i am 44 yrs old with three almost grown children and two grand-children i do have scholiosis and my right breast never developed but thanks to bad eyes i am alive as my pre-op surgery tests for my eye problem was the reason they found my cancer
  • auntm
    auntm Member Posts: 1
    #7
    joseph38- I am 39-Female. I was diegnosed at age 3,my right kidney was removed.The tumor traveld to my brain,when i was 4 a tumor the size of a small tennisball was removed.I have ,like you, have had back problems,most of my hair,where the tumor was has still not grown back. I have beaten all the ods though.I also co-rote a book about my& my families fight with Cancer. " Aganst the odds" A true story about Michele, a Cancer Survivor. Michele
  • janice17
    janice17 Member Posts: 4 Member
    #8
    tegawega said:

    hi i was diagnosed when i was 18mos. ihad my left kidney removed then a lobe from my lung numerous radiation and chemo i am 44 yrs old with three almost grown children and two grand-children i do have scholiosis and my right breast never developed but thanks to bad eyes i am alive as my pre-op surgery tests for my eye problem was the reason they found my cancer

    please read me
    hi hope you still read this post. when i was 17 mos i had my left kidney removed due to a wilms tumor. i to had radiation and chemo, so much so that it burnt my back, where there are many hugh and small, white scars, to this day, they can still hurt. at the time l was fighting cancer, chickenpoxs, shingles and the flu. so when they give me the treatments, they burned all the spots where the shingles where. l too have scholiosis and my left breast did not develop right. l was told i would never have kids, my son is 18 and my daughter is 22. l am 47 years old and a 46 year cancer survivour. i to have other problems, because of this but at least im here. please reply, and we can share stories l would like to hear more about you.
  • cvb53
    cvb53 Member Posts: 6 Member
    #9
    photoman said:

    Hello Joseph,

    This November will be 40 years since my Wilm's Tumor diagnosis. Man it's hard to believe! Time is flying by!

    I was diagnosed at age 3 and my right kidney was removed. I then went to M.D.Anderson for chemo and radiation treatment. I too have had back problems related to the radiation treatment but nothing so severe that required surgery.

    In 1998 I did have to go back to M.D.Anderson for surgical removal of a benign tumor on my spine. I'm sure it's related to the my cancer history, either genetics or from the treatments I received. Who knows?

    David

    back problems
    I would love to chat with you about your back. I too had a wilms tumor At 18 months and as you know the radiation back then was not pinpoint like it is today, I have my left shoulder falling back, due to decreased muscle mass on the right side.I am having all kinds of problems. As you know,there aren't many around who can share about these problems would love to chat. please write
  • cvb53
    cvb53 Member Posts: 6 Member
    #10
    janice17 said:

    please read me
    hi hope you still read this post. when i was 17 mos i had my left kidney removed due to a wilms tumor. i to had radiation and chemo, so much so that it burnt my back, where there are many hugh and small, white scars, to this day, they can still hurt. at the time l was fighting cancer, chickenpoxs, shingles and the flu. so when they give me the treatments, they burned all the spots where the shingles where. l too have scholiosis and my left breast did not develop right. l was told i would never have kids, my son is 18 and my daughter is 22. l am 47 years old and a 46 year cancer survivour. i to have other problems, because of this but at least im here. please reply, and we can share stories l would like to hear more about you.

    Hi
    Janice, I just read your post and had to write you. I had a wilms tumor at 17 months too. I have the scarring and my right shoulder falls way back. I am having back problems but it feels like the doctors today don't get it. Have you had the same? I was in Boston Children"s Hospital at that time. I feel very lucky too be alive but have some pain I am dealing with.I have scholiosis too. Let,s chat.
  • cvb53
    cvb53 Member Posts: 6 Member
    #11
    janice17 said:

    please read me
    hi hope you still read this post. when i was 17 mos i had my left kidney removed due to a wilms tumor. i to had radiation and chemo, so much so that it burnt my back, where there are many hugh and small, white scars, to this day, they can still hurt. at the time l was fighting cancer, chickenpoxs, shingles and the flu. so when they give me the treatments, they burned all the spots where the shingles where. l too have scholiosis and my left breast did not develop right. l was told i would never have kids, my son is 18 and my daughter is 22. l am 47 years old and a 46 year cancer survivour. i to have other problems, because of this but at least im here. please reply, and we can share stories l would like to hear more about you.

    Hi
  • confused1
    confused1 Member Posts: 50
    #12
    auntm said:

    joseph38- I am 39-Female. I was diegnosed at age 3,my right kidney was removed.The tumor traveld to my brain,when i was 4 a tumor the size of a small tennisball was removed.I have ,like you, have had back problems,most of my hair,where the tumor was has still not grown back. I have beaten all the ods though.I also co-rote a book about my& my families fight with Cancer. " Aganst the odds" A true story about Michele, a Cancer Survivor. Michele

    brohter-in law Survivor
    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
  • madaboutkale
    madaboutkale Member Posts: 5
    #13
    cvb53 said:

    back problems
    I would love to chat with you about your back. I too had a wilms tumor At 18 months and as you know the radiation back then was not pinpoint like it is today, I have my left shoulder falling back, due to decreased muscle mass on the right side.I am having all kinds of problems. As you know,there aren't many around who can share about these problems would love to chat. please write

    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
  • livingwithit
    livingwithit Member Posts: 1
    #14
    cvb53 said:

    Hi
    Janice, I just read your post and had to write you. I had a wilms tumor at 17 months too. I have the scarring and my right shoulder falls way back. I am having back problems but it feels like the doctors today don't get it. Have you had the same? I was in Boston Children"s Hospital at that time. I feel very lucky too be alive but have some pain I am dealing with.I have scholiosis too. Let,s chat.

    wilms tumor survivor
    Hello,
    I'm Marrisa, I'm 38, I had a Wilm's Tumor in my L kiney before I was 4. I was given 31 months of chemotherapy 'by accident' and was over radiated for a person with a fully contained stage 1 tumor. I have no working muscle in my left back and torso and have what they termed a 'radio scoliosis'. I live on muscle relaxers and pain killers and it took me years to get doctors to understand the extent of which I have been affected. I can hardly work because I do not have the strength to sit or stand for long periods of time without terrible muscle spasms and pain. I have never met anyone or spoken to anyone else who has survived wilm's tumor, and was wondering who else is out there.
    I also had several benign tumors in my ovaries and finally ovarian cancer of which the surgeon felt was secondary to the radiation treatments. I wish someone would just invent a zipper!!
  • Zal101
    Zal101 Member Posts: 1
    #15
    livingwithit said:

    wilms tumor survivor
    Hello,
    I'm Marrisa, I'm 38, I had a Wilm's Tumor in my L kiney before I was 4. I was given 31 months of chemotherapy 'by accident' and was over radiated for a person with a fully contained stage 1 tumor. I have no working muscle in my left back and torso and have what they termed a 'radio scoliosis'. I live on muscle relaxers and pain killers and it took me years to get doctors to understand the extent of which I have been affected. I can hardly work because I do not have the strength to sit or stand for long periods of time without terrible muscle spasms and pain. I have never met anyone or spoken to anyone else who has survived wilm's tumor, and was wondering who else is out there.
    I also had several benign tumors in my ovaries and finally ovarian cancer of which the surgeon felt was secondary to the radiation treatments. I wish someone would just invent a zipper!!

    Also a wilms tumor survivor
    I've had my right kidney removed at 18 months old, followed by chemotherapy, though i'm not exactly sure what all that entails. All i know is that i can remember feeling like i was burning from the inside out while a doctor told me it'll be fine. Fast forward to when i was 25 and both of my shoulders are torn over halfway through. I've had my left shoulder repaired, which required that my bicep to be clipped back to the shoulder joint and physical therapy. My right shoulder still needs work at the age of 28, and i find that as time passes, it gets worse on it's own even though i can't lift more than 30 lbs. anymore. I also have huge knots on my wrists, which hurt like crazy, that i think could be carpal tunnel syndrome, but i like my video games so who's to say if it's a late effect or not.
    I'm not sure if this is common with people like us, but i've never weighed more than 120 lbs. I guess i'm just curious about this. I can see now that i've got it somewhat easy, but it's nice knowing i'm not the only person out there dealing with this. I must say that to those who are dealing with worse, i admire your courage and strength.
    I'd also like to know if anyone else deals with Adjustment Disorder? I don't always know what the trigger is, and it's hard for my loved ones to deal with at times.
  • redbeard0206
    redbeard0206 Member Posts: 10
    #16
    wilm's survivor
    Was diagnosed with Wilm's tumor in 1969. Had complete left nephrectomy. Received vincristin and cosmagen chemotherapies and cobalt treatments. Now 43 years later I have been diagnosed with clear cell renal carcinoma with a 4cm tumor on right kidney and it matastisized to S1 & L5 with approximate 4 cm tumor. Tumor has been removed from spine. Surgery was said to be palpative. Have seen great relief of pain in back. Then a month or so later had partial right nephrectomy with clean margins and good kidney output. I am taking Sutent and getting 25 radiation treatments to the spine in S1 & L5 area. I am down 12 of the 25 treatments. Dr. confronted me today with idea of doing 3 additional treatments. His concern is complications that might arise do to previous cobalt treatments 43 years ago. Possible complications are scar tissue in bowel in a few years and nerve damage or scar tissue affecting nerves in and around lower spine. I have a few days to make upmy mind but thought I might find some helpful information here to assist me in making the decision.
  • happy64
    happy64 Member Posts: 1
    #17
    48 years and counting
    My wilm's was treated in 1964 with surgery for a grapefruit sized tumor that had metastasized, radiation, and actinomycin D. Great to say that I have had no problems, only mild scolosis, and two wonderful daughters without any issues! Wonderful to see the progress they made from a disease without hope to a 90% cure rate.
  • lightbrite
    lightbrite Member Posts: 2
    #18
    cvb53 said:

    back problems
    I would love to chat with you about your back. I too had a wilms tumor At 18 months and as you know the radiation back then was not pinpoint like it is today, I have my left shoulder falling back, due to decreased muscle mass on the right side.I am having all kinds of problems. As you know,there aren't many around who can share about these problems would love to chat. please write

    Wilms tumor survivor
    I too am a wilms tumor survivor I was diaganost in 1965 and was born with three kidneys two of which were full of cancer. They removed them and applied Deep ray ex-ray which is why I am having so much trouble now in my later life. at 37 they found a hole in my intestine and remove 30 percent of my large one and 30 percent of my small one. I was lucky and pulled through without a poop bag yea. my back is in the shape of a letter c and I am forever on pheninal patches which is opoid pain killers in the form of a skin patch for I can not absorb anything through my intestines the little hairs that are inside your intestines which pull nutrition from your food before it goes to waste are gone damaged by exray. This is why I was so underweight and malnurtished all my life. I am now on TPN which is liquid feed through your blood viens I hook up everynight for 14 hours to recieve nutrition. It causes problems on your liver which I have not to date shown yea. My left lung was stunted to the size of a ten year olds and the last central line placement saw the surgeon puncture that lung. Now I have a hard time breathing thanks to that guy and have never recovered completly from that. My heart is now failing and cant quite pump all the fluid around my body so it throws it around the outside of my lungs making it extremly hard to breath. Laysec is given to drain the fluid and I administer this once a day now.
    I am still alive and have two children and one grandchild a miricle in itself actually. I will continue the stuggle for life as long as I can for the other opion "death" is not an alternative for me. How have you struggled? I am now 48 turning 49 in June
  • lightbrite
    lightbrite Member Posts: 2
    #19
    cvb53 said:

    back problems
    I would love to chat with you about your back. I too had a wilms tumor At 18 months and as you know the radiation back then was not pinpoint like it is today, I have my left shoulder falling back, due to decreased muscle mass on the right side.I am having all kinds of problems. As you know,there aren't many around who can share about these problems would love to chat. please write

    Wilms tumor survivor
    Stay living
  • Richardstin73
    Richardstin73 Member Posts: 1
    #20
    photoman said:

    Hello Joseph,

    This November will be 40 years since my Wilm's Tumor diagnosis. Man it's hard to believe! Time is flying by!

    I was diagnosed at age 3 and my right kidney was removed. I then went to M.D.Anderson for chemo and radiation treatment. I too have had back problems related to the radiation treatment but nothing so severe that required surgery.

    In 1998 I did have to go back to M.D.Anderson for surgical removal of a benign tumor on my spine. I'm sure it's related to the my cancer history, either genetics or from the treatments I received. Who knows?

    David

    Wilma toumor
    Hi David my name is Richard I was diagnosed with a Wilms toumor when I was five.
    I guess we were both ginny pigs when it came Time to pump on the radiation and keemo.
    I had a toumor that was about 10. - 20 pounds it's been so long I can remember all the details
    It ws wrapped arround my left kidney so they had to remove my kidney
    Iam 38 years old now and an a snowboard junky.
    Iam physically fit but, Can't seem to gain anymore than 130 pound.
    Have you noticed any side affects from the radiation And keemo ?
    I have always had trouble with math and writing tests. Just find it hard grasping it
    Iam glad I have found this cancer chat room

    Richards
  • leposierrasp367
    leposierrasp367 Member Posts: 4
    #21
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