35 year survivor of Wilms Tumor of the kidney

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Hi, I was diagnosed with a Wilms tumour in 1987 and have been clear since 1989 I lost a kidney, half a lung and part of my liver. I suffer from back pain and I can’t seem to put weight on I am 27 years old and about 98pounds. Is this normal? Also I found out several years ago that the radiotherapy left me infertile is this normal also. Thanks for you help

15 year survivor of Wilms

I was ten when I was diagnosed with Wilms. Crazy right? I still haven't met anyone who was my age when they were first diagnosed. Anyways, I developed bad scoliosis when I was 15 from my radiation treatments. The doctors wanted to do surgery with the Harrington Rod but I don't want that. I've learned to live with the chronic pain that it brings but it can definitely be frustrating at times. I also lack muscle on the right side where my kidney was removed. I've had several other late effects pop up too from my treatments. Are back issues the only problems most of you have had?

Wilms Tumour Suvivors

Hi Everyone,

I am the Grandmother of a 2 1/2year old who has just been diagnosed with a Wilm's Tumour. It is heart breaking watching her go through this. I am wondering to all you Wilm's Tumour survivors do you remember what it was like when you were little or have you forgotton?

 

Elsie said:

Wilms Tumour Suvivors

Hi Everyone,

I am the Grandmother of a 2 1/2year old who has just been diagnosed with a Wilm's Tumour. It is heart breaking watching her go through this. I am wondering to all you Wilm's Tumour survivors do you remember what it was like when you were little or have you forgotton?

 

Wilms Tumor

Hi, just found this site. I am a 70 year old mother of a Wilms tumor child.  She is going to be 47 in a couple of months. She was diagnosed when she was 2 1/2. At that time they removed a goose egg size tumor that has several marble sized rumors attached. She was treated at Duke Med Ctr in Durham, NC. She had three weeks of radiation and then 18 mo. Of chem. She was very sick with both trestments. I am glad to say that she does not remember anything of what she went through. One though, she will not let even let them bring in hospital tray in her room after all these years. I think that she psychology links the smell of the food to when she was so sick with vomiting. We were told that she probably would not be able to have children. After being married 3 years she became pregnant. Again we had to go to Duke. They told her that their was a good possibility that she wouldn't carry the baby to full term. She did, and had a very healthy normal sized baby.

Growing up she had many problems. A moderate learning disability, eye problems, scoliosis. She now has had severe back problems for the past 10 years. One surgery that helped for a couple of years. Dr's now won't touch her. She is still working bit it is hard for her. I hope my answer has helped. 

TarynNicole said:

Wilms Tumor Survivor Reply

Hi Radiefa. I wanted to reply becuase I have similair side effects. My right side is smaller than my left side but not generally noticable; shoe size, ring size etc. Also I have a 13" scar across the midsection of my stomach. I was diagnosed at age 5 in 1994. I underwent chemo and a full left nephrocotomy and went into remission after. I love hearing you have 2 beautiful children as I always research adult survivors of Wilms for any fertility issues etc as I get closer to that time in my life of wanting children. God bless.

Wilms Tumor Survivor

Hi, I wanted to replay because I too have the same side effects. I was diagnosed at 4 months old in 1989, I went through chemo and radiation and also had my left kidney removed. My left side is smaller than my right side and I do have a large scar across my stomach. It is nice to have a place to talk about this and see that I am not the only one who has these side effects. I hope all of you are doing well!

I was treated at Children's

I was treated at Children's in Philadelphia, back in 1983, when I was 6 years old. I wasn't expected to survive surgery, and the radiation and chemo almost killed me a few times. I've dealt with long term side effects and still have a few new ones popping up as I'm getting older. I lost my teeth at 19 due to how they were damaged coming in during treatment. I just had an implantable defibrillator/pacemaker put in last winter. Sometimes it feels as though I've been dealing with major medical issues ever since I was diagnosed.

I can tell you that there is always some hope. This is my miracle. My absolute worst point of chemo sickness was a day when I had lost the use of my arms and legs, and had just woken up unable to see. My mom called the hospital -we lived an hour away- and they told her that she was just overreacting. They thought she was exaggerating. Then my pediatrician knocked on the door. He had been sitting down watching the game when something told him that he had to go see me right then. He lived at the other end of the street. Picked up his black bag and came over, yelled at the hospital, helped my mom get me there.

I wish I could promise you that everything will be all right. When your daughter gets older she'll likely rebel against all of this and it'll drive you nuts. All the specialists, all the procedures, all the EVERYTHING. I hit my twenties and just wanted to be normal for once. I didn't see a doctor more than a few times for five years. Then my first child came along and I went back to all the doctors again. I have two kids and they have some medical issues of their own although not cancer.

This is the most important part of my whole response to you: My advice to you both as a survivor of Wilms and as a mom of kids with special needs, is to look for a bright spot in everything. It doesn't have to be large. Just a sliver. Today I was almost in a car accident. I can come away from it telling myself that I still have wonderful reflexes and good brakes. It doesn't erase the horribleness of the event but it doesn't become an enormous trauma waiting to swallow me whole. My son had to have a g-tube surgically placed to allow tube feedings because he won't eat. I can say honestly that it makes giving him meds so much easier on both of us. He doesn't have to be convinced to swallow it and I know that he's received the entire dose. Find humor even if it's dark humor. I believe that if I stop laughing then I'll start crying, and if I start crying I can't stop. Don't be afraid to be silly with your daughter at random moments. Don't let your head and heart get stuck on the heartache and exhaustion of it, just set it aside for a few minutes here and there and be in the moment with her sharing some good times. Those lighter moments can sustain you through unbearable stress.