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Wilms Tumor Survior

LadyJUSA
Posts: 3
Joined: Oct 2006

Hi. I'm 25 and I was diagnosed with a wilms' tumor at the age of 4 through a series of events.

I was hospitalized for a routine appendectomy. My appendix was removed but after recovery I still had severe abdomonial pain.

I was again hospitalized and had an exploritory operation. They discoverd that my intestine had twisted and during the operation it burst.

Apon repair they had accidently discovered a tumor in my right kidney. My Kidney was removed and sent off for testing and I was later diagnosed with a wilms tumor.

I would like to hear from other Wilms' Tumor Surviors. I am interested in their stories.

Thanks.

Scott1
Posts: 2
Joined: Jun 2006

Hello LadyJUSA,

I'm 35. I had Wilms Tumor at age 4 as well. The tumor was ruptured when my babysitter tossed me in the air to catch me on the way down. I started crying with abdomonial pain. I was hospitalized for a appendectomy. Once in surgery the tumor was discovered in my kidney and then removed. thanks for sharing your story, I've never met or known someone that hat Wilms. I visited CSN to begin learning what to expect from the radiation as far as side effects. Radiation was part of my treatment for Wilms.
I haven't really found answers yet, but I've just began to research.

Be Well,
Joe

leejcarr
Posts: 4
Joined: May 2009

I to am a 37 yr survivior of wilms i was a year old when i lost my kidney i suffer many many side effects cronic back pain curve spin do to radiation, depression, diabetes, hip pain that is a phantom pian so the doctors say, enlarged spleen, and more please send me some of your symptoms thank lee

KATLYNN
Posts: 1
Joined: Jul 2009

Hi Joe and all other survivors,
I am trying to find some information for my brother who had surgery for a Wilms Tumor in 1966. He had cobalt treatments before and after the nephrectomy. 2 months ago, he had surgery to repair a fistula (abnormal hole) between his stomach and colon. Therefore, all his food was literally passing straight through him and he was suffering from malnutrition. Since the surgery-which was not successful-he has developed a hole in his stomach that is exposed to the outside and will not heal due to the radiation damage to his abdomen. He is scheduled to begin hyperbaric oxygen treatments tomorrow to help with healing.
I'm wondering if any of you guys have experienced any problems with unhealthy bowels; malnutrition due to radiation damage and what your experience has been. I am very concerned about my brother due to the malnutrition issues.
He is about 4'8" and weights about 63 pounds. He is 44 years old. He has double scoliosis. He has the best personality and outlook on life. He just wants to feel good again and be around his family at home. He has been in the hospital since his surgery 2 months ago.
I would appreciate any info.

bouncecraze
Posts: 1
Joined: Jan 2014

 

I too had cobalt treatments. I was born with a wilms tumor and they discovered it when I was 8 months old. When they removed it, it was the size of a grapefruit and weighed 1 1/2 lbs. The cobalt treatments did a lot of damage to my right side. I have scoliosis and muscle atrophy on that side and have never developed any fat cells at all where they did the treatments. I also have had unhealthy bowels all my life. I have IBS, high blood pressure, and am also diabetic now along with other health issues. I have always wondered if others have had the same digestive problems I have. I am 5'4'' and weighed 98lbs. until 8 years ago when I finally gained weight from a side effect from medications I was put on. I will be 44 years old this Feb. and have survived cancer twice (I was 2 1/2 years old the second time and only have GOD to thank for the cure).  One thing I have learned is not to eat food that has been processed, premade, or package with lots MSG, Whey or other fillers and additives from stores. The only take out food I can eat anymore without getting sick for days is sushi and it is to costly to have that very often. I have never been able to find out until finding you on this site, if anyone else had problems with unhealthy bowles and nutrition. I hope that the hyperbaric treatments helped him.

B-ALIVE55
Posts: 1
Joined: Jan 2007

Hi! Am a female in my mid-50's, a survivor of 53+ years of a Wilm's tumor that took my right kidney at age 2. It was by accident that our family doctor found it as my brother was very ill and doctor checked me over, too, and found the mass.

No chemo in those days; after surgery and several deep X-ray treatments, I was eventually declared cancer-free. Was told I was among the youngest to have gone thru this, and that 90% of children died from this carcinoma in those days.

However, the treatments damaged my body; hence, I was unable to have children and have several other health conditions as a result. But isn't life a trade-off sometimes?

lilbit63
Posts: 5
Joined: Dec 2007

hoping you are still checking this message board at times
i am a 44 year old who had wilm tumor 39 years ago.
i was not expected to live because in those days very few did.
now although i am fortunate to have had two children i have so many medical problems

janice17
Posts: 4
Joined: Apr 2009

h.i i hope you still check the board as well.l am 47 and had my left kidney removed 46 years ago. when i was 17 months old, it also was a wilms tumor. they gave me a week to live, but im still here. l also have two children but was told i would never have any. l also have lots of medical problems. hope you reply and we can share stories or just talk. thanks janice

madaboutkale
Posts: 5
Joined: Sep 2009

Hello,

I had Wilm's Tumor when I was 2 years old in 1974. I had radiation, chemo and kidney removal. I haven't really had many issues until I had children. Because my body is uneven in the ribs, hips and waist (due to the radiation and kidney removal), my physical structure had a hard time carrying a child through the pregnancy. I did it twice, but I now have lower lumbar herniated discs and sciatica down one of my legs, which is debilitating. I also have some scoliosis where my right kidney was removed; my lower spine curves to my right side where my kidney would have been. My sister (a physical therapist) recently found an incredible medical book with a small chapter dedicated to a grown woman who had Wilm's tumor. They showed her body as an adult and I was astonished. The whole chapter is about how this doctor helped her realign her spine through exercises, breathing, stretches. She looked just like me. I was amazed. I guess I never thought about what other survivors looked like. Now that I'm having many physical problems with my spine, I wanted to touch base with others to see if that was a problem other Wilms tumor survivors have experienced and what helped them. I can be reached at madaboutkale@gmail.com

- Lori

karlaanne
Posts: 7
Joined: Jan 2010

Lori,
I am courious did you have the curviture in your spine before kids? my daughter is 17, a wilms surviver, they took her kidney and also had radition treatment.... she has a curve in her spine and after seeing an othopedic surgeon she was told that she was done growing and that her spine will not change anymore; being that I work with PT's and see patients coming in with spine issues I worry that my daughter if she does have kids will have the same issues that you are experiencing.... ugh! I wish that I could know what to do or ask when we see her doctors. I love this site and being able to talk to people going through the same things. did you have restrictions growing up? weight limit due to stress on heart? I too am interested in others that have or are going through same... thanks and good luck Lori

madaboutkale
Posts: 5
Joined: Sep 2009

Yes, I've had the curvature of my spine since the removal of my kidney when I was 3. As for restrictions, I was never allowed to play contact sports (no softball, yes to volleyball though - thank goodness because I didn't like track). I never had a weight limit. And that was it.

I wish someone emphasized how important core and back strength was (in my teens and 20s) to better assist me with everyday activities and future pregnancies. Looking back, I wish I knew about better posture and core strength. I was great at cardio and basic exercise stuff, but that really didn't make me strong, just "in shape". With the weight gain and the lower back pain that comes with it, I was not prepared. If I could go back in time I'd probably invest in a pilates program (with a physical therapist or expert instructor) or really work on a daily core and back exercise program (which I'm currently doing now, which is alleviating the pain and I believe will heal me over time). Also, it really helped that my physical therapist worked with me through the Schroth scoliosis treatment method. It helped me align my spine and work from optimal positions to build strength. So, my only advice is to emphasize strength in major and supporting muscles that surround the spine. There's a good chance that your daughter will be fine during pregnancy, but being physically strong in the right areas beforehand will probably ensure the best outcome. :)

erin3746
Posts: 3
Joined: Sep 2009

Hi Janice
Hope we can be friends my daughter is now 6 she was diagnosed with wilms at 5 years old. Hope you are feeling well hope to hear from you soon

Rick

karlaanne
Posts: 7
Joined: Jan 2010

did you have any lifting restrictions set upon you because of the stress it would put on your heart? my daughter has a 30 lb weight limit that she can carry... just looking ahead for her. she was 4 when she was diagonsed with wilms tumor and now 17 whats ahead for her... thanks

Lynnette05
Posts: 2
Joined: Nov 2010

My right kidney was removed at the age of 4 in 1952. At this time there was a 2% survival rate past the age of 2. The earlier it is discovered the better. I too had the x-ray treatments. I had no problems what so ever. The only possible side effect was I developed benign tumors in my thyroid (which had to be removed) and they said this may have been due to the x-ray treatment.

Aquagirl18
Posts: 45
Joined: Apr 2003

Hi there
I am 29 and when I was first diagnosed when around 13 months old and my doctors thought I had Wilm's when they discovered later that it was Neuroblastoma. I would like to hear from survivors of Wilm's tumor and Neuroblastoma.
Thanks

d1o2t3
Posts: 1
Joined: Dec 2008

Hi LadyJUSA - I had a tumour and right kidney removed at the age of 5 years and am now 63 years old - I have 2 sons - 6 grand children and 2 great grand children - I am still healthy and active and lead an independant lifestyle - would like to hear how you are going since your post was in 2006 hope all is still well with you

megan123
Posts: 1
Joined: May 2009

Hello!
I am 16 (almost 17) years old and I was diagnosed with wilms' tumor when I was 7 months old.
Although I do not remember any of what happened to me, my parents and grandparents have painted pictures for me with their stories.

I was having a check up at my local doctor and they noticed that my head was a bit larger than normal and while checking for that they found my wilms tumor.

My right kidney was removed shortly after the consultation at Childrens Hospital.

I went to Children's Hospital in 1993 for my chemothreapy and radiation as well however I did not lose any of my hair until after the chemo was finished.

As I am still growing up, I am living a very healthy lifestyle. I am active and can still play sports. I cannot play contact sports though because my doctor wants to make sure nothing happens to my working left kidney.

I still go to Childrens Hospital in Hollywood once a year, every year.

I would love to hear from more wilm's tumor survivors, for I have never met any in my life. Thanks to everyone for sharing their stories.

karlaanne
Posts: 7
Joined: Jan 2010

I would love for you to talk with my daughter who is now 17 and was 4 when she was diagnosed with wilms. It would be great to connect with girls who are going through what she is. do you have facebook? email me at karkar4068@Yahoo.com if interested in connecting with her. thanks!

leejcarr
Posts: 4
Joined: May 2009

I'm a 37 year survivior with many long term effects do to the treatment im wondering if you do also and what they are

bublrap
Posts: 1
Joined: Jun 2009

I was diagnosed with this cancer at 13 months old. My pediatrician felt a lump at one of my check ups as my mom has told me. My left Kidney was removed. I had chemo and lost some of my hair. Made yearly visits to the childrens hospital till i was about 13 yrs old. Then i was allowed to go to my regular doctor. I am 38 now, and have alot of medical problems. I cant have children becuz of the chemo, even tho the docs said that should not be a problem...they didnt know alot of things back then. Went thru alot of fertility treatments to no success and had to have a total hysterectomy at 34. I dont know of anyone personally with my same history. I just came across this site.

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

tesslynn32
Posts: 5
Joined: Aug 2009

I had wilms tumor at the age of 3 and am now 33. I have scoliosis because the chemo hit my spine. I have chronic high blood pressure due to the fact that I have only one kidney and have had the high blood pressure since age 14 and been on medication since then and am still having medical problems.

wilms_pa
Posts: 1
Joined: Jul 2009

Hey everyone, I am a 24 years old and was diagnosed with a wilms tumor at age 14 months. I don't remember anything about it and only know what my parents had told me. As the story goes I had not been voiding and "just not doing right" I think they brought me in with a fever as well. Luckily the doc that I went to had seen the exact same case 2 week prior and was pretty sure he knew what I had. They shipped me off to a children's hospital that day and had surgery the next. I underwent chemo and radiation and everything went routine.

I had a pretty normal childhood and had no problems until about puberty when I had adhesions from the scar tissue. It took the doctors awhile to figure out what it was but eventually had them cut out. Other than that I have had no problems that could be contributed to the cancer or treatment. I have been able to play all kinds of sports growing up but currently I think I am going to try and stay away from bullfighting and kickboxing;). Overall I would say I am currently in excellent health and I love to hear from people with all kinds of stories and experiences.

beccabee
Posts: 3
Joined: Oct 2010

Hi, I'm 17 years old...I was diagnosed with wilms tumor when I was 15 months old. I had a nephrectemy(spelling?) and was on Chemo thereapy for 6 months. I was on achtinamiacinde and vencristine, and was allergic to achtinamiacinde so they put me on adrianmiacin(an older drug)

I am cancer free now, but ever since I was little I've had this thing I call a "fat pad" it's a mass in the middle of my abodmen under and surrounding my belly button. I loose and gain weight under it.I have had it my whole life, but in the past month it's grown and I know it's not me gaining weight because I've lost weight. Even when I lay down it is clearly visible and you can see my pulse in my stomich. I've been to three or four doctors about it and no one has been able to figure it out and nothing shows up on an ultra sound.

Has anyone else had this problem? Please let me know!

YDH
Posts: 3
Joined: Oct 2010

Hi,

I just joined this discussion today. I had my Wilm's tumor removed when I was 3 yers old. I am 46 years old now. I do not have the "fat pad" on my stomach as you do, but I certainly have a fat pad on my right side (the opposite side of my kidney removal). It never goes away, and is quite noticeable when I wear certain clothes. I also have scoliosis, which make the area look even larger. There are many things that can not be explained with Wilm's Tumor. Thank goodness for this discussion group...at least if you post something there is a possibility that someone else has a similar situation.

Take Care
Yvette

JGEARHART0004
Posts: 3
Joined: Dec 2011

I to have the same thing. When they did my surgery they cut me from my left side to my right side. I have the same problem losing weight, that area seems to stay. I consulted my doctor when I had my gallbladder removed and he said it was because it was scar tissue and the only way to remove it is a cosmetic procedure (which most insurances won't cover). I was also on adrianmiacin and atinomyocin-d. Watch for the side effects. They are finding out now that the adrianmiacin is causing premature menopause and hairloss. I am glad I found this site. I don't know many people that have had or even know what form of cancer a Wilm's Tumor is. I find myself having to explain it to everyone, including some doctors. Thank god I am a nursing studet!

JGEARHART0004
Posts: 3
Joined: Dec 2011

I to have the same thing. When they did my surgery they cut me from my left side to my right side. I have the same problem losing weight, that area seems to stay. I consulted my doctor when I had my gallbladder removed and he said it was because it was scar tissue and the only way to remove it is a cosmetic procedure (which most insurances won't cover). I was also on adrianmiacin and atinomyocin-d. Watch for the side effects. They are finding out now that the adrianmiacin is causing premature menopause and hairloss. I am glad I found this site. I don't know many people that have had or even know what form of cancer a Wilm's Tumor is. I find myself having to explain it to everyone, including some doctors. Thank god I am a nursing student!

mean56
Posts: 11
Joined: Nov 2009

Hi all!

I am a 53 year old wilms survivor. I was diagnosed at birth and had my kidney removed and treatments when I was 2-3 months old. I have a vague memory of some treatments and always thought there was nothing I couldn't do. I was told that I would not have children - I have 3 & 2 grandchildren. After I read your posts, I realize I have side effects from the disease; scoliosis, uneven body, abdominal/intestinal issues - those I always knew. I did not relate my chronic depression with the disease. I can remember blowing out the candles on my birthday cake when I was 4 and wishing to be happy. The depression has been the most debilitating for me. It's an oxymoron being a "survivor/suicidal". I have worked my tail off since I was 15 doing real battle with depression. I have had tons of therapy & I knew at 15 that I must have a chemical imbalance. I have tried some anti-depressant meds (zoloft & effexor) but I am not comfortable with the lack of knowledge of depression. It's frustrating - but if depression is a true side effect of the willms tumor battle, we might be on to something. I would love to hear what you all have to say about this side effect, especially success stories! I am proud to be a survivor - just so tired of the depression battle!

karlaanne
Posts: 7
Joined: Jan 2010

I believe that my daughter has a little of that. she is not very social and is sensitive to things. she shuts herself out and doesnt share things such as feelings or anything. It could be a teen thing but sometimes I think there is more too it. she writes her feelings down and when I can I read them and try to talk to her about things without letting on I have read her thoughts. I have to do this in order to know whats going on in her head... what to do to help her open up to me and to others???

Stefanietje
Posts: 1
Joined: Sep 2011

Hello everyone,

I am 22 years old and I live in The Netherlands.
I never got into contact with other people that had a Wilms tumor.
This is my story:
I had a Wilms tumor when I was 2 years old.
Because the tumor was pressing my intestines I had big belly pains and problems with going to the toilet. At that time no one knew this was because of a tumor pressing on my intestines. One day my mom picked me up from a friend's house and touched my belly and noticed a big bump. The first doctor she went to said I had an enlarged liver. When I got to the hospital they did all kinds of test and found out it was Wilms tumor. I had chemo, then they removed my right kidney, after the operation I also had chemotherapy.
I now go to the hospital every 2 years, because I take part in a research program for late effects in people that had childhoodcancer.
I never had any big problems after my cancer, except that I am always tired. I can't do the same as friends of my age, because I get too tired. I also never liked to do any sports, because it wears me out completely. I wonder if anyone else recognizes this feeling of having no energy and always being tired.

Stefanie

JGEARHART0004
Posts: 3
Joined: Dec 2011

I am a 33 yr old Wilm's Tumor survivor. I was diagnosed at the age of 2 with a wilm's tumor when I was going in for a xray. The only reason they found it was because the breathing tube that they had placed down my throat I pulled out. I went through surgery where they almost cut me completely in half to remove my kidney, adrenal gland, and the tumor. I later had to go back in and have a section of my small intestine removed due to a bowel obstruction. I don't remember much about what I went through but I do know that all the medication I was on was experimental. I am finding now that there are some side effects that are popping up that they were not aware of. I am curious as to what kinda side effects I have to come. I have the hip pain, some female issues, and degenerative disc. I am wondering if anyone else is having the same effects or if my doctors are wrong and this has nothing to do with the medication. I do know I was told that I would never have kids and I have three blonde hair, blue eyed girls who run my life (one of which is autistic). I was released from a doctors care at the age of 18 and as of today have not had any relapses! I feel I was lucky and had someone on my side. I hear everyday of kids who are diagnosed with cancer who do not make it and it upsets me.

Syed Osman Pasha
Posts: 1
Joined: Dec 2011

my 1 yr old son is diagnosed with wilms tumor , if u please have any info relating to the cause medicines of any system based homeo , allopathy , herbal anything please forward it to my email sosmanpasha@gmail.com , his operation is there within this day ,

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