Adults that had Wilms Tumor as a child

janice17 said:

Wilms tumor penpal
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.

My Brother in law.
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

26 year Wilms' Survivor
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

Hi Elizabeth!
I too had a
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?

mrlongtooth said:

Survivor
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.

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?

dnkaps8 said:

Wilms Long term effects - foot pain
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.

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.

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.

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!

janice17 said:

Wilms tumor penpal
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.

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.

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!

Is it still possible for me to conceive?
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?