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Adults that had Wilms Tumor as a child

Elizabeth2009
Posts: 2
Joined: Apr 2009

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.

janice17
Posts: 4
Joined: Apr 2009

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's picture
confused1
Posts: 50
Joined: Feb 2009

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

mroyal60
Posts: 12
Joined: Jun 2011
kelly_p
Posts: 1
Joined: Jul 2009

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
Posts: 1
Joined: Jul 2002

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
Posts: 3
Joined: Aug 2009

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
Posts: 1
Joined: Sep 2009

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
Posts: 5
Joined: Aug 2009

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 swtcountrygirl28@aol.com.

Jessica

mrlongtooth's picture
mrlongtooth
Posts: 1
Joined: Mar 2010

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
Posts: 1
Joined: Apr 2010

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?

gaylemkm
Posts: 4
Joined: Jul 2012

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.

charliesgirl13's picture
charliesgirl13
Posts: 1
Joined: Nov 2011

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.

dnkaps8
Posts: 1
Joined: Apr 2010

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's picture
DulaEllis
Posts: 2
Joined: Oct 2010

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
Posts: 5
Joined: Sep 2009

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
Posts: 3
Joined: Oct 2010

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! :)

cinta
Posts: 1
Joined: Jun 2012

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?

juliska32
Posts: 1
Joined: Nov 2013

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

zumomma
Posts: 6
Joined: Jul 2010

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

Belive
Posts: 1
Joined: Jul 2011

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

Nathanial
Posts: 2
Joined: May 2012

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 natahutcheson@gmail.com and I will reply to any question you may have. thank you and keep up hope.

mroyal60
Posts: 12
Joined: Jun 2011

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

G Schall
Posts: 1
Joined: Jun 2013

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

Nathanial
Posts: 2
Joined: May 2012

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.

BlessedOne62
Posts: 4
Joined: Jul 2012

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
Posts: 3
Joined: Jul 2012

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.

Jules10K
Posts: 6
Joined: Sep 2012

38 years later, I'm still here.

aucoeurdeparis
Posts: 1
Joined: Nov 2013

47 years later still here!

tray808
Posts: 2
Joined: Feb 2013

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's picture
Amber239
Posts: 1
Joined: May 2013

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 :(

CM777
Posts: 1
Joined: Oct 2013

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!

 

 

 

 

 

Jebed
Posts: 1
Joined: Jun 2014

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.

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