Wilm's Tumor Survivor

senoritaselig
senoritaselig Member Posts: 2
edited March 2014 in Childhood Cancers #1
hi im 22F and i had wilms turmor stage 3-4 when i was 3yrs old. i survived with out having cancer again. i want to know if there is anyone else who like me has a very large indentation where their kidney used to be. ive never seen anyone like me before and my docotors say they dont know if other survivors grow up to have a indentation where their kidney used to be... but i imagine there has got to be someone out there!also i have pretty sharp back pain most days after doing sports or bending over alot. which could be attributed to osteoperosis in the spine (due to radiation) or having had some muscles removed/radiated on only my right side. i also have what looks like a bump on the non-operated side of my back when i bend over but not when i stand up... is there anyone like me?

Comments

  • YPadilla49
    YPadilla49 Member Posts: 1
    #2
    yeah! i totally have a weird indentation where my kidney used to be...it makes shopping for skirts difficult..hehe. and i have back problems too due to the radiation therapy..so yeah. you're totally NOT alone on that one...the bump thing i don't have, but my the inoperated side of me is a little larger, due to my kidney growing larger to accomodate the job of 2 kidneys...but yeah. i just wanted to let you know, i have the indentation too.
  • renaekenzie
    renaekenzie Member Posts: 2
    #3
    Hey! I might be a little late with this, but I just got on the site. Anyways, I am a 22F Wilm's Tumor survivor as well, and while I don't have an indentation (I did not have radiation initially, only when I had lung mets), but I do have a weird bulge where my abdominal muscles weren't put together correctly, and uneveness in my rib cage where they were opened, and from radiation. And much like you I have a lot of bak pain if I am standing for too long. I don't know if that's any help to you, but its good to hear I'm not the only one
  • Scott1
    Scott1 Member Posts: 2 Member
    #4
    I'm 35 and had Wilms Tumor when I was 5. I had my left Kindey removed. In front I have what I guess you can call an indentation. The muscle is smaller there and therefore sinks compared to the right side. On my back I do have a bump on my right side where there was no surgery. This is because the muscle has grown bigger to try to support my back due to the lack of muscle on the left. My right Kidney is also bigger than normal. I hvae back pain every day. OUCH!. So yeah, your not alone. Take care.
  • suzybee
    suzybee Member Posts: 3 Member
    #5
    Hi! I am 53 years old and just found this site recently. I had my right kidney removed when I was 2 years old. I do have a huge indentation on that side, in addition I was diagnosed with scoliosis at age 12 and which I was told was made more pronounced due to the surgery and radiation.I notice that most of these replies are from people who are 35 or younger. Is there anyone closer to my age?
  • Corduroy
    Corduroy Member Posts: 2
    #6
    joining the chorus here.... me too on indentation/bump. i think my bump is muscle compensation, but i don't know. indentation might be from radiation. i also have slight scoliosis and one leg is 1 cm shorter than the other (mostly unrelated to wilms). so ALL my skirts and pants are a little lopsided! :>

    i definitely don't have a great back, but i find abdominal exercises (crunches, etc.) do help. a P.T. might be able to suggest good exercises? maybe talk to someone who has dealt with scoliosis, since that's also a misbalancing of the back.

    sorry, suzybee, i'm 31, although i was diagnosed at the relatively "old" age of 6 1/2.
  • annedora
    annedora Member Posts: 3
    #7
    Corduroy said:

    joining the chorus here.... me too on indentation/bump. i think my bump is muscle compensation, but i don't know. indentation might be from radiation. i also have slight scoliosis and one leg is 1 cm shorter than the other (mostly unrelated to wilms). so ALL my skirts and pants are a little lopsided! :>

    i definitely don't have a great back, but i find abdominal exercises (crunches, etc.) do help. a P.T. might be able to suggest good exercises? maybe talk to someone who has dealt with scoliosis, since that's also a misbalancing of the back.

    sorry, suzybee, i'm 31, although i was diagnosed at the relatively "old" age of 6 1/2.

    Hi! I am a 31 yr old survivor, left kidney removed at age 4. I have the indentation with no bump. I do have mild scoliosis and occasional back pain. I have never met or spoken with another Wilm's survivor so nice to "meet" all of you! :-)
  • LadyJUSA
    LadyJUSA Member Posts: 3
    #8
    annedora said:

    Hi! I am a 31 yr old survivor, left kidney removed at age 4. I have the indentation with no bump. I do have mild scoliosis and occasional back pain. I have never met or spoken with another Wilm's survivor so nice to "meet" all of you! :-)

    I was dianosed with a wilms' tumor at the age of 4. It was accidently discovered due to a series of events. I was hospitalized for a routine appendectimy. My appendix was removed but after recovery I still had severe admonial pain. I had an exploritory operation apon which they discovered a twisted intestine that burst while during the operation. It was during this operation that they happened apon finding a tumor on my right kindey. My kindey was removed and sent for testing. I was later diagnosed with a wilms' tumor.
  • photoman
    photoman Member Posts: 4
    #9
    suzybee said:

    Hi! I am 53 years old and just found this site recently. I had my right kidney removed when I was 2 years old. I do have a huge indentation on that side, in addition I was diagnosed with scoliosis at age 12 and which I was told was made more pronounced due to the surgery and radiation.I notice that most of these replies are from people who are 35 or younger. Is there anyone closer to my age?

    Hi Suzy! I am 45, diagnosed at age 3, right kidney removed, chemo, radiation, the works.

    Deja vu regarding all the symptoms mentioned and I can add one more. I don't have any abdominal hair where the radiation treatment was done! LOL

    I have all the others, scoliosis, kyphosis, ever kind of osis...LOL Also the hump on my back non-tumor side and the void where they removed the kidney. I think most of that is tissue damage from the radiation though.
  • lilbit63
    lilbit63 Member Posts: 5 Member
    #10
    oh, there ya'll are!!!!!
    i just found this site and am looking for people such as me who has survived wilms tumor from the dinosaur age when none of us was supposed to live and still here we are.
    i have chronic back pain, scolios, female problems that caused me to need a 5 hour hysterectomy.
    yes, i am happy and blessed to be alive but shoot must we suffer for living
    anyway please answer back i want to chat with you guys
  • Unknown
    Unknown
    #11
    This comment has been removed by the Moderator
  • bittycakes
    bittycakes Member Posts: 1
    #12
    lilbit63 said:

    oh, there ya'll are!!!!!
    i just found this site and am looking for people such as me who has survived wilms tumor from the dinosaur age when none of us was supposed to live and still here we are.
    i have chronic back pain, scolios, female problems that caused me to need a 5 hour hysterectomy.
    yes, i am happy and blessed to be alive but shoot must we suffer for living
    anyway please answer back i want to chat with you guys

    hi everyone!! i was
    hi everyone!! i was diagnosed with wilms when i was 9 months old, i'm now 17. i've been healthy ever since and reading all these stories makes me so happy that theres people just like me! i just get worried because usually i read something discouraging that says people that have wilms have a higher risk of developing cancer later on in life :( i'm so glad that everyone that posted here is alive and well! and hopefully stronger then before :)
  • redbeard0206
    redbeard0206 Member Posts: 10
    #13
    wilm's survivor
    I was diagnosed at age 6, now 49.
    I do have a fairly noticeable depression where my left kidney was and not sure if it is related but have scoliosis or curvature of the spine.
  • hawktata63
    hawktata63 Member Posts: 2
    #14
    Wilm's Tumor Survivor
    Wow, I never knew there was a site like this. I am 48 and had my right kidney taken out at the age of 3, in 1966. The cancer spread to my lungs. Took both cobalt and chemo (I know one was vincristine, don't know if there were more) I was treated at Texas Children's Hospital in Houston, TX. I have had my appendix and gall bladder out. (All on the right side) I have had scoliosis since I was a teen. Have a little back pain sometimes. 3 years ago I had a my right hip resurfaced, due to osteoarthritis cause by the radiation the drs think. Had no cartlidge in my hip. And yes my right hip area is indented and smaller than my left side. But doing good now just walk with a slight limp.
  • lilmel22
    lilmel22 Member Posts: 3
    #15
    hawktata63 said:

    Wilm's Tumor Survivor
    Wow, I never knew there was a site like this. I am 48 and had my right kidney taken out at the age of 3, in 1966. The cancer spread to my lungs. Took both cobalt and chemo (I know one was vincristine, don't know if there were more) I was treated at Texas Children's Hospital in Houston, TX. I have had my appendix and gall bladder out. (All on the right side) I have had scoliosis since I was a teen. Have a little back pain sometimes. 3 years ago I had a my right hip resurfaced, due to osteoarthritis cause by the radiation the drs think. Had no cartlidge in my hip. And yes my right hip area is indented and smaller than my left side. But doing good now just walk with a slight limp.

    Wilms Survivor

    I'm a 15 yr survivor of Wilms. I was diagnosed when I was ten. My kidney had burst and spread the cancer to other organs. I too have the indentation on my right side as well as pretty bad scoliosis. I have back pain every day but have learned to live with it because I don't want the Harrington Rod surgery that was offered to me. I've also had other late effects pop up such as Reynaud's phenomenon, hott flashes/pain in my legs and some minor heart issues. I was recently diagnosed with hypothyroidism too. Don't know if its related to the treatments but its definitely a possibility. Has anyone else had any other problems other than the scoliosis? I'm so thankful to be alive but as if having cancer wasn't bad enough, these late effects really suck. Makes it hard to feel like you are resuming a normal life when you still have every day issues to deal with related to the cancer and treatments.

  • momsurvivor
    momsurvivor Member Posts: 2
    #16
    lilmel22 said:

    Wilms Survivor

    I'm a 15 yr survivor of Wilms. I was diagnosed when I was ten. My kidney had burst and spread the cancer to other organs. I too have the indentation on my right side as well as pretty bad scoliosis. I have back pain every day but have learned to live with it because I don't want the Harrington Rod surgery that was offered to me. I've also had other late effects pop up such as Reynaud's phenomenon, hott flashes/pain in my legs and some minor heart issues. I was recently diagnosed with hypothyroidism too. Don't know if its related to the treatments but its definitely a possibility. Has anyone else had any other problems other than the scoliosis? I'm so thankful to be alive but as if having cancer wasn't bad enough, these late effects really suck. Makes it hard to feel like you are resuming a normal life when you still have every day issues to deal with related to the cancer and treatments.

    late effects

    HI I was diagnosed late at the age of 13! I had my left kidney removed and it came back in my lung. I am wondering about late effects. I have weird muscle pain and joint pain. They are saying that i have sort of minor auto immune thing and had muscle and nerve testing done. They noticed that my ankles, feet, and chins have some nerve damage. I was wondeirng if anyone else had been told that? I had Vincristine and it gave me that foot drop. ALhtough now i can walk on my heels, if i try to walk fast my feet kind of slam down and have poor balance. So just wondering if anyone else has any auto immune stuff. I am now 39 yrs old with 2 beautiful healthy children! Thank you God. 

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