Adults that had Wilms Tumor as a child

2

Comments

  • BlessedOne62
    BlessedOne62 Member Posts: 4
    Nathanial said:

    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 natahucheson@gmail.com and I will try to help or talk to ya.

    Sharing my story with you too....
    To anyone who had Wilms Tumor, please know. I am almost 50. I had left kidney removed at age 5 back in 1965 and did a whole year of radiation. In my adult life, I was fine until 1999 when I was told I had a goiter. The goiter turned out to be thryoid cancer. I had 3 neck surgeries. Two 2 remove each side of the thyroid then a 3rd to remove a parathyroid that enlarged itself after the right thyroid was removed. I was told this was due to radiation from Wilms. In the late 80's I suffered 2 miscarriages and 2 eptopic pregnancies, I was told this was due to radiation.

    In 2008 I suffered an acute form of pericarditis and spent 17 days in hospital only to find out no one knew what caused it. After that I never felt right. For 4 years I went back and forth to doctors. Was told I had primary pulmonary hypertension. It was not until 3 months ago I was tired of feeling short of breath and requested an echo. There I saw it said heavily calcified mitral valve. I searched on my own for a heart doctor and long story short I said I am NOT leaving until I get answers. After one heart cath, a CT scan and an MRI, I was told I had constrictive pericarditis. Of which I always thought this. Hence the best heart surgeon in PA, Dr. Mumtaz agreed to do surgery. When I went under, I came out w/no heart sack. I was told the heart sack was so hard around my heart he had to peel it off my heart like an orange. He also told me my lungs are radiated too and caused issues during surgery as they were VERY weak. He also told me there was a calcium deposit on my esophogus area and hence caused 4 breathing tubes to be put down my throat during surgery and caused me to be intubated 2 times. I never came out of ICU for 4 days. The whole experience was a nightmare. I had this all done on 6/13/12 and honestly had such an awful experience I will never undergo surgery again, I am so scared I won't make it through. I felt I was going to die this last time. I thank GOD for a 2nd chance at life and want to take the time to share my life with others. I know it's depressing and you ask why me, but may I say to anyone who is suffering from depression or sadness to NEVER give up. Through my hard times I held an ANGEL in my left hand through all my hard times and thanks to my mother and father, they NEVER left my side. Find love and peace in someone you love and find peace in Jesus if you believe. If you don't please reach out to HIM as HE truly will give you hope to keep on keep on. I live alone and have 3 small dogs that help ease the unconditional love I need to feel along w/my terrific love from my parents. All I can say it to think on what life still has to offer. I thank God I have all my limbs and I can see and still take a breath. God only gives us what we can handle. My brain swelled this last time during surgery and I was very full of hallucinations and physchotic, but I came through it all. It's a painful recovery, but now my scar will be a constant reminder of what was back in 1965 and what is now and the renewed hope and strength that I am gaining daily.

    If anyone wants to chat or email, I can be reached at two2sweet42@yahoo.com

    Be blessed as you read this and realize there is ALWAYS something to be thankful for.
  • rbiffle12
    rbiffle12 Member Posts: 3
    Wilms survivor
    Hi i'm 20 and I had a stage 4 Wilms tumor in my left kidney when I was 2 and had my kidney removed as wellas a dime sized portion of my left lung and I saw that there are other women out there who went through this and were able to have children so my question is did you have any fertility help or were you able to convince just fine? I'm getting married in 10 days and we are wanting to start a family in the near future and I just wanted to see how easy or hard it might be? Thank you.
  • gaylemkm
    gaylemkm Member Posts: 4
    lululove said:

    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?

    I am not a wilms survivor,
    I am not a wilms survivor, but I am a parent of a child who was diagnosed with Wilms in March 2011. You mentioned it spread to your lungs .... could youtell me more about what you know? My son has 'nodules' in his lungs. He started with 2 at the time of diagnosis. 3 months into chemo, he developed 9 more 'nodules'. Those 11 nodules remained stable. In June of 2012 he's developed 3 more new 'nodules'. In August 2012, we will have a new scan to determine if these nodules have changed in size. Does any of this sound like your journey. Please email me at : martensbusserv@tds.net Thank you.
  • mroyal60
    mroyal60 Member Posts: 12 Member
    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.

    I am 52 and have one son age 27

    Wilm's tumor at age 6 mos in 1966. Right kidney removed Waited till age 25 to have child C section Did take a toll on my body. I do believe it was a big risk. Talk to OBGYN. I'm so happy to have him but I considered what if I didn't make it. Who would raise my child. My husband had a large family and loving family but I'm not sure if that was fair. I felt like I owed everything I had healthwise to my child and did not risk a second child. It was a giant decision. I feared at one pont in my life if it would even be fair to adopt.

    I only had raditation no chemo. I have heard chemo can weaken the other kidney. That is a question for the docotrs and specify that factor on this message board for an answer from someone who has that experience
  • Jules10K
    Jules10K Member Posts: 6
    38 years later, I'm still
    38 years later, I'm still here.
  • tray808
    tray808 Member Posts: 2
    Long term Wilm's Survivors long term side effects

    I am 30 years old and was diagnosed with stage 4 wilms tumor at age 7.5. I am interested in the long term side effects that people are dealing with. I went through chemo and massive doses of radiation and when I relapsed I was part of Chicaogo's very first group of children to undergo a BMT. Since I can remember I have had problems with sleeping and just this last year my PC doc offically diagnosed me as an Insomiac! My other issue and it's what worries me is that I am aware that I have some memory issues. I haven't lost it or anything to that extreme, but it is hard for me to remember things. I feel stupid about it but my husband gets on me about that, he just reminds me of what I went through and to explore others who have too. So if you have any long term side effects and you want to write, I'm around. As you can see from the time, I'm awake alot!

    :) 

  • Amber239
    Amber239 Member Posts: 1
    Wilms surviver

    Hey everyone. I was diagnosed with a stage 4 Wilms tumour in left kidney at 4 years of age and had surgery to remove my kidney, plus chemo and radiation.

    I'm now 22 and going strong. I'm wondering if anyone out there who had the same cancer I did has had success with having children. My partner and I have just started trying to conceive, and I'm booked in to see my oncologist, but she can't see me for 2 months :(

  • G Schall
    G Schall Member Posts: 1
    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.

    Children

    Hello my name is genia. Even though I am not a surviver like you I am getting married to one. I saw your post as I was doing two me searching and I wanted to give you some hope. I'm not sure how many have responded as I just now have joined this group but...my very soon to be husband had wilms tumor when he was 8 years old. After havinag pretty much most of his insides removed and much of chemo treatment we have a beautiful little boy laying our his crib in the very next room. We tried for 6 months and I knew that I could have children as i already have one we were losing hope just like you. Im not sure of your history but his was pretty harsh and heart breaking. He is going to be 25 years old and we now have a 4 month old beautiful and healthy little boy. Don't give up hope unti all options are exhausted. As I have stated before I am not a survived but I do love a man who is and share my life with him so if you have any questions ease feel fee to contact me any time. Best of luck

  • CM777
    CM777 Member Posts: 1 Member
    Life Expectancy

    Hi,

    I had a Wilm's tumor at 11 months old; had left kidney removed and massive amounts of radiation. I am now 57, which is pretty great. I've had three more run-ins with the big C, but it hasn't gotten me yet. I have an excellent quality of life, I am healthy and I have to say that in spite if it all I'm just grateful to be here. Life is good. My sister says I'm like a cat--nine lives, which means that I should be able to cheat the reaper a few more times. :)

    I was never able to conceive, but with the amount of radiation I received it's probably just as well. God knows what the radiation did  to my ovaries.

    So, I say don't worry about life expectancy. Live every day to the fullest, since all any of us really has is today. You may wake up someday and be 57, and wonder how in the heck that happened. My parents were told they'd be lucky if I made it to 12....

    Just enjoy your life. Breathe deeply. Be grateful for your reprieve. If you're reading this, you're lucky!

     

     

     

     

     

  • aucoeurdeparis
    aucoeurdeparis Member Posts: 1 Member
    Jules10K said:

    38 years later, I'm still
    38 years later, I'm still here.

    Still here

    47 years later still here!

  • juliska32
    juliska32 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! :)

    Body structure post wilms treatment effecting pregnancy

    Thank you for sharing your experience. I am 44 year old female starting IVF and have concerns that my body structure too will cause problems with a pregnancy. What were some of your problems with your first pregnancy. Do you have any suggestions ?Thank you

  • Belive
    Belive Member Posts: 1
    zumomma said:

    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

    pregnancy after WT

    Hi Zumomma,

    I was dignosed with wt when i was 5 years old they removed me the right kidney and i had chemo and radio theraphy also, now im 23 y. I was told i would never be able to have kids due the radio theraphy.Last April I discovered I was pregnant with 8 weeks, it was the biggest joy I had ever felt in my whole life but in July my water brokes was only 18 weeks and i remained bed rest for 2 months , then in September just before labour starts doctors told me that the heart beat is no longer beating and we lost him at 26 weeks. doctors are telling me that this happened cause of radio therapy I had in pelvic that my uterus could'nt be able to strech like normal women . It could be this will repeat again. im so scared to loose another child but I dont want to give up I really wish to become a mother. Just want to ask you what doctors have told you about having still birth , was the same reason they gave to me ? it would be really appriciate if you can help me im passing a really terrible time, I cant accepted that I lost my baby

    Thanks

  • Jebed
    Jebed Member Posts: 1 Member
    Hello
    My name is Jan and I

    Hello

    My name is Jan and I had a Kidney removed at 4 weeks old due to a wilms tumor.  I am now 67 years old and doing well. I never had any other cancer problems.

  • Twinb1953
    Twinb1953 Member Posts: 3 Member
    Wilms Tumor

    I am 62 and was diagnosed in 1955 at the age of 18 months.  I had a right nephrectomy followed by 26 radiation treatments.  I have two children and had no serious issues with the pregnancies.  Life has been good.

  • Talin
    Talin Member Posts: 1
    Twinb1953 said:

    Wilms Tumor

    I am 62 and was diagnosed in 1955 at the age of 18 months.  I had a right nephrectomy followed by 26 radiation treatments.  I have two children and had no serious issues with the pregnancies.  Life has been good.

    Wilms Tumor

    Hi Twinb1953,

    Do you know you were at which stage when you were diagnosed with Wilms tumor?

  • Kgr134
    Kgr134 Member Posts: 1
    Wilms TurmorDoes

    i was diagnosed with a WT at 6 months old and that was back in 1962 and went to MD Anderson in Houston.  Had my right kidney and appendix removed. Went through the alot of chemo and radiation which back then was broad band. Good news is at 55 I have no other cancer issues. At the time my mother was told treatments would make a deformed midget. Well I grew to 5'5", the others in my family are 6 feet. I have pretty bad scoliosis and the radiation stunted the growth of three of my vertibre. This made my trunk about 3 or 4 inches shorter so my rib cage sits on top of my hips so my arms looks longer with my hands are down  by my knees. The ribs are bent and twisted since they didnt have room to grow. I have a huge indention on my right side and no fat on that side either. The left side has fat and it looks like the kidney got bigger doing the job of two. My right hip is smaller than the other which makes me swivil when I walk. like others I've never had a pair of pants that fit. Shirts fit ok at the top but are all too long so I just tuck the bottom excess in.I've been the exact same size since 6th grade and have a hard time gaining weight which some people would think is good thing. I do struggle with depression at times and because of my deformities have severe self esteem issues that make me feel uncomfortable in socail situations.  Does anyone else have this? I've never met anyone with this and was so glad to find this forum.

  • Twinb1953
    Twinb1953 Member Posts: 3 Member
    Talin said:

    Wilms Tumor

    Hi Twinb1953,

    Do you know you were at which stage when you were diagnosed with Wilms tumor?

    Staging

    Hello,

    Just saw your post. I believe it was staged as a I. My mother told me it was encased in a sac. However, little was known back then. 

  • Greenwitch
    Greenwitch Member Posts: 2 Member
    Kgrl134- You're not alone! I

    Kgrl134- You're not alone! I was diagnosed ten days after my 6th birthday in 1983. I was stage 3 unfavorable, my left kidney was completely eaten and while it had spread to my right kidney it was still encapsulated so that the surgeon could just "scrape it off"(that's how I think about it). The cut was just over halfway around my body and they took my left kidney and appendix out along with a couple lymph glands. Then mega radiation and mega chemo that my mom said was partly experimental and she had to sign waivers for it. I inherited scoliosos from my mom's family and there was a lot of concern that the radiation damage to my lower back where the curve is would put me at risk for all sorts of pain. I also started to lean over to the left as my body kept growing.

     

    Ballet lessons for a few years helped to stretch my side up so that I'm not hunched over. My right hip and waist appear normal. The left hip is normal but just over the hip is a massive jut in and no fat. So I totally know how you feel with that. The lack of fat on my ribs on that side is sucky whenever I get an echocardiogram. I was lucky that most of the women in my family sew and tailor, so I had stuff that fit properly. I also love skirts and dresses. The top of the skirt I can make a tuck to exactly fit my waist.

     

    The weirdest body issue I have is something I found out when I got pregnant. For everybody else in the world the norm is that when they lay on their left side their blood pressure goes down. For me, it goes up. I have to lay on my right side to get the pressure down. They said the radiation killed one ovary completely and that it wasn't likely I'd ever get pregnant. So I had two kids and was thankful that I'd always been on birth control. I had two micro preemies from preeclampsia and they're doing well now; my daughter looks like she could be my twin and I was paranoid when she turned 6 that something would happen.

     

    I turned 40 this year and I still can't believe that I'm still alive. The long term physical damage is still showing up. In January I got a defibrillator/pacemaker. I'm curious as to how many of us end up getting these devices.

  • Ttate53787
    Ttate53787 Member Posts: 1 Member
    edited June 2018 #40
    Kgr134 said:

    Wilms TurmorDoes

    i was diagnosed with a WT at 6 months old and that was back in 1962 and went to MD Anderson in Houston.  Had my right kidney and appendix removed. Went through the alot of chemo and radiation which back then was broad band. Good news is at 55 I have no other cancer issues. At the time my mother was told treatments would make a deformed midget. Well I grew to 5'5", the others in my family are 6 feet. I have pretty bad scoliosis and the radiation stunted the growth of three of my vertibre. This made my trunk about 3 or 4 inches shorter so my rib cage sits on top of my hips so my arms looks longer with my hands are down  by my knees. The ribs are bent and twisted since they didnt have room to grow. I have a huge indention on my right side and no fat on that side either. The left side has fat and it looks like the kidney got bigger doing the job of two. My right hip is smaller than the other which makes me swivil when I walk. like others I've never had a pair of pants that fit. Shirts fit ok at the top but are all too long so I just tuck the bottom excess in.I've been the exact same size since 6th grade and have a hard time gaining weight which some people would think is good thing. I do struggle with depression at times and because of my deformities have severe self esteem issues that make me feel uncomfortable in socail situations.  Does anyone else have this? I've never met anyone with this and was so glad to find this forum.

    Wilms Tumor

    Hi - Your story sounds a lot like mine. I was diagnosed with Wilms tumor in 1963 when I was 3. I had my right kidney removed and found out at age 50 that they removed my appendix as well when I ended up in the emergency room with severe stomach pains and they saw that I didn’t have an appendix. At least they knew it wasn’t appendicitis! This continues to happen and all they can figure out is that maybe it is adhesions attaching to my colon from scar tissue from the surgery. I also ended up with a huge indent in the front and back on my right side where no fat has grown. No doctor can tell me why this happened. I was very overweight as a child\teenager, due partly from my parents pulling me out of any physical education classes or sports due to fear that I would hurt myself, so it was quite obvious with any clothes I would wear and still to this day at age 57, clothes still don’t fit right. This caused a lot of self esteem issues and body image problems that I carried into my marriage. It also caused me to have a very short trunk so when I sat at a table I would be made fun of because they said it didn’t look like I could see up over the table! I did end up with scoliosis and uneven hips which they said was due to all the radiation. I suffered with chronic back pain for 21 years and in October/December of 2017 I had 8 vertebrae fused and am finally pain free! I did have 2 boys no problem other than a little lopsided when carrying them. I too have suffered from depression my whole life  and struggled with alcohol dependency up to the age of 27. Along the way, I had several doctors tell me that I’m lucky to be alive and to have children, so I will just count my many blessings! Wishing you the best!

  • Renago
    Renago Member Posts: 2
    edited June 2018 #41
    Childhood Cancer

    I had Wilms tumor at age 6