I am a 35 year wilms tumor survivor

Zeyad

JeffMyers said:

Another Wilms Tumor Survivor
My name is Jeff Myers I am a 40 year Wilms Tumor Survivor. I was 2 and had my right Kidney removed. At 42 years old I am happily married with 3 daughters. I teach our Churchs Teen Sunday School Class and am a Deacon in my Church. All I can say is Gods been good!

Hey Jeff!! I am so happy to
Hey Jeff!! I am so happy to hear of your "success" story!! I am a wilms tumor survivor. Got it at age 5 was stage IV. Recent graduate in Medicine .. You can guess what made me choose that path. Want to ask you, ever had any problems with fertility? any info would be GREAT!! I am too scared to get a semen analysis, want to hear it from you first ..

adeptbeth

mudshark said:

oldest Wilms survivor?
You are NOT ALONE- I was diagnosed in August of 1957-I was 3 and 1/2 years old.Operated on in the Chelsea Naval Hospital in Boston, Mass. They took my left kidney and spleen, then bombarded me with radiation for what seemed like forever. I live in central New York state, about 35 miles north-east of Syracuse, which meant trips back to Boston every month, then 3 months, then six months, then finally once a year untill I was 18. At the 15 year mark, I was cut loose from Chelsea and continued with chek-ups at Griffis AFbase hospital untill I turned 21, and lost dependent status. My Dad retired from the Navy after 20 years the year I was born-1954 which allowed me dependent status in the first place. On the 15th of February this year, I turned 56, which makes me a 53 year cancer survivor. I can't find anyone that seems to have lasted as long as I have, and I would love to hear from any other long-term survivors.
My e-mail is paul.retired@live.com good health and long life to all

Well, I think my husband is the oldest survivor--1956
He was born in 1955 and developed it at 6 months in early 1956. He was treated in Alexandria, Louisiana. He was told at the time that he was one of the first children to survive.

He's suffering now, Liver cancer that they can't find the primary for. He was treated for 8 months with chemo but kept running into kidney failure. Because he only has 1 kidney, of course, they had to stop after 22 treatments. He's had gout, too. No kids, but his whole life he was told he wouldn't see 15 years old, then he wouldn't live to 20 years old then 30 years old, and so on.

The Hutchings Institute in Seattle seems to be doing a lot of work with survivors, they've got the Wilms Tumor Survivor Group.

The British Childhood Cancer Survivors Study found that 95% of survivors had some kind of solid primary neoplasm.

Please take care of yourselves and get plenty of careful monitoring. It seems like the leaders in the field are Norman Breslow at the Hutchinson Center, a gentleman named J B Beckwith and another one named J S Dome.

The national Wilms Tumor Study has merged with 3 other groups and is now the Children's Oncology Group.

AmynBri

eaprende said:

Hi David
I am 25 years old and I am also a cancer survivor. I was diagnosed when I was 3. I had it on my left side. The funny thing is that my mother had it when she was young as well. She was nine months old when she got diagnosed. She passed away at the age of 39 ten years ago from the radiation affects. God bless you in the fact that you are healthy! I mean that from the bottom of my heart.

When I had this horrid disease I had relapsed and it was on my aorta. I went through a different number of treatments. The doctors had lost hope and I showed them wrong. It has been 22 years since I was diagnosed and I am cancer free since I was 6 years old.

This is a question for anyone that wants to reply. I was told that I have nodule on my right lung. I have made an appointment with an oncologist to have tests done. Has anyone been diagnosed with other forms of cancer since treatment of WT?

Elizabeth

a

a

AmynBri

oliviabellebndgk said:

I'm happy for you
I've been in remition for ten years now. I have nothing wrong with me although I do have to take a lot of precautions but they're nothing too big of a deal. I live a normal life, just have to be careful about coming to all appts, not taking the wrong meds that can hurt my kidney, and staying out of the sun. i also cannot play contact sports without a kidney sheild, but that's not a big deal. It doesn't bother me at all:) I wish your daughter luck and she's in my prayers .</p>

Wilms
oliviabellebndgk,

My 9 year old daughter was diagnosed last month (Jan. 2012) with Stage 4 Wilms. I am interested in hearing your story and experiences with your wilms. She has not yet had her radical nephrectomy or the resection of the large tumor in her right lung as they are waiting for the chemo meds to shrink those down to a size that is safer for resection. I am very scared for her. She starts an trial treatment at week 7 (yesterday marked week 5 of her treatment). What was your treatment like? What effects have you had? Do you or your parents wish you had done anything differently? Do you have any advice to give?

You have to wear a kidney shield? Why is that? Is it because of the nephrectomy or something else?

I would love to hear from you.

~Amy

Texas_wedge

AmynBri said:

Wilms
oliviabellebndgk,

My 9 year old daughter was diagnosed last month (Jan. 2012) with Stage 4 Wilms. I am interested in hearing your story and experiences with your wilms. She has not yet had her radical nephrectomy or the resection of the large tumor in her right lung as they are waiting for the chemo meds to shrink those down to a size that is safer for resection. I am very scared for her. She starts an trial treatment at week 7 (yesterday marked week 5 of her treatment). What was your treatment like? What effects have you had? Do you or your parents wish you had done anything differently? Do you have any advice to give?

You have to wear a kidney shield? Why is that? Is it because of the nephrectomy or something else?

I would love to hear from you.

~Amy

Contact
Amy, just in case you didn't spot it, oliviabellebridgk gave her email address above (on March 18th 2011) and invited contact with her at

oliviabellebndgk@gmail.com

I hope she can help you and I wish the very best for you and your Daughter.

RoxAnnaF

Almost 47 year old survivor
I had surgery in March 1965. My pediatrician tried to tell my mom it was from me eating gum. He also told my mom I wouldn't live.

That being said I had the surgery in Rapid City SD by a urologist, both he and the hospital did the surgery at no charge because they were unsure of the surgery. And of course a stay in the hospital then radiation started shortly after that. Not knowing the extent radiation and cobalt treatments that bombarded my left side from my mid rib cage to my hip on the left side.

My ribs have never grown on my left side and are still the size of a 3 year old, lack of working back muscles have been an issue, but I found good chiropractic treatments alleviate and help with the induced scoliosis and pain and wished I had started them as a youth.

I had 3 children but my doctor was not happy with me worried about the strain and high bloodpressure associated with child birth. Some hbp with first child but other 2 were normal.

I have some hip deterioration I am watching as I get older, but after 2 heart tests a stress and mri. My heart appears good.

My right kidney is enlarged due to the lack of a left kidney, but doctor thinks that is consistent.

I wear lots of pants with elastic waist or pull string waist, very rarely find good fitting bottoms.

mroyal60

52 and 1/2 survivor
Right kidney removed in 1966 at age 6mos. Looking for senior citizens AARP card holders and Wilms hx YES!I am happy to type 52 years survivor.

Had radiation only. Few body problems not kidney problems. Curved spine and whats looks like a big shark bite out of right side of body. Gets deeper each passing year Have a high hip and a low hip really a sag and muscle problem at waist line due to deep scar on one side (Asymetric torso)so clothes choosen by their camo effect.

Thank you for posting as I have never considered there might be gender specific
effects and differences. Please share if you are comfortable

Anyone out there have the shark bite torso effect??

Twinb1953

adeptbeth said:

Well, I think my husband is the oldest survivor--1956
He was born in 1955 and developed it at 6 months in early 1956. He was treated in Alexandria, Louisiana. He was told at the time that he was one of the first children to survive.

He's suffering now, Liver cancer that they can't find the primary for. He was treated for 8 months with chemo but kept running into kidney failure. Because he only has 1 kidney, of course, they had to stop after 22 treatments. He's had gout, too. No kids, but his whole life he was told he wouldn't see 15 years old, then he wouldn't live to 20 years old then 30 years old, and so on.

The Hutchings Institute in Seattle seems to be doing a lot of work with survivors, they've got the Wilms Tumor Survivor Group.

The British Childhood Cancer Survivors Study found that 95% of survivors had some kind of solid primary neoplasm.

Please take care of yourselves and get plenty of careful monitoring. It seems like the leaders in the field are Norman Breslow at the Hutchinson Center, a gentleman named J B Beckwith and another one named J S Dome.

The national Wilms Tumor Study has merged with 3 other groups and is now the Children's Oncology Group.

I think I hold the record
I just discovered this website after trying to do some research about the surgeon who saved my life. I was born in 1953 and diagnosed with Wilm's Tumor in 1955. I had a right nephrectomy at Mount Sinai Hospital by a surgeon named Dr. Ravitch. I was then given "26 x-ray treatments" as my mother called them. Funny thing is that I didn't find out about any of this until I was 21 years old. My mother just couldn't bring herself to talk about it. I always knew I had one kidney. The scar starts at just about my naval and goes around my right side to about mid-back. I asked about it for years but was told it was a sick kidney that had to come out. When I got married at 19 I told my doctor I was concerned about having children, so he did kidney function tests and said everything was fine. He still would not tell me what it was. (Old fashioned GP). At 21, I started my family. I went back to our GP and told a fib. I said that my OBGYN wanted to know what the clinical diagnosis was so he wrote, "Wilm's Tumor" on a prescription pad. I went to a medical library and learned everything I could about Wilm's. Two years later, at the age of 23, I felt a funny tingling sensation on my right back. I scratched it and it started bleeding. I went back to my GP who sent me to a dermatologist. He thought it was skin cancer. He looked at me and said it was obvious that I did not abuse the sun and asked me about my scar. When I told him what it was, he asked if I had had radiation treatments.....back to Mom. That is when she told me about the "x-ray" treatments. Hey, Mom, anything else you want to tell me?? Two years later, I developed another skin cancer. (both basal cell carcinomas) The last one was 34 years ago. Haven't gotten another one. I do have scoliosis though, (not severe), the Jessica Rabbit body (very small waistline). Laughed my butt off when I read it above. I had NO idea others were going through this. I have two herniated discs at L4,L5. I connected it to my career. Yes, I became a nurse. Currently a Director of Nursing. Love it and often wonder if I would have done something different had I not had Wilm's. Does anyone know anything about Dr. Ravitch? I am interested in hearing more Wilm's stories. I found all of above fascinating. By the way, Twin A was absolutely fine. We are fraternal twins.

leejcarr

health issues
im a 40 yr survivor now just wondering if you have health issues, i do wondering if you can contact me at my email weedog@live.com

leejcarr

mkdsmall said:

I have the same issue with pants!
I am sitting here laughing in an Oh My Gosh the world is such a small place way. I have been complaining for years about how my pants do not fit me in the waist and how I have such trouble finding pants. I have mild scoliosis confirmed by x-rays but I also have the same issue of one hip bone protruding more than the other and curving forward more.

I was diagnosed at 2 1/2 and had nephrectomy, radiation and chemo as well. My luck was not so good with fertility. I was diagnosed last July as infertile - medical infertility due most likely to my chemo and or radiation. Ironically no one ever told my parents about this as a possibility.

I have had night sweats and other signs of early menopause at 37! Not so much fun but considering I am a survivor I figure the side effects are better than if I had not been treated.

I am followed at Dana Farber in Boston and in fact have a follow up appt in August and have asked insistently for a follow up with a orthopedist to look at my hips/back.

Would love to connect with another survivor- you can email via my profile here. Good luck with everything with your husband!

ongoing health issues
im a 40 plus year survivor and having issues also please email me at weedog@live.com

RoxAnnaF

mroyal60 said:

52 and 1/2 survivor
Right kidney removed in 1966 at age 6mos. Looking for senior citizens AARP card holders and Wilms hx YES!I am happy to type 52 years survivor.

Had radiation only. Few body problems not kidney problems. Curved spine and whats looks like a big shark bite out of right side of body. Gets deeper each passing year Have a high hip and a low hip really a sag and muscle problem at waist line due to deep scar on one side (Asymetric torso)so clothes choosen by their camo effect.

Thank you for posting as I have never considered there might be gender specific
effects and differences. Please share if you are comfortable

Anyone out there have the shark bite torso effect??

shark bite
YES!! I have a huge difference from left to right side, and use my shirts to cover the inconsistency in my left side. It seems the skin didn't grow when I did. My ribs are small and didn't grow, no back muscle, etc., Oh and my belly button is pulled way over to the left

carson00

my son Carson is a survivor of Wilms Tumor
Hello, my son was diagnosed with Wilms Tumor at the age of 21 months old.It was the end of March 2002. He does have health problems that were caused by chemo. He has bladder, bowel, and a mild mental diagnoses. He just got dianosed with a slight case of Autism. We do not know if it was caused by Chemo or not. His right kidney had to be removed. His tumor was the size of a grapefruit. His bladder was normal size before chemo. Now it only holds 7 oz. As it has shrank. He had dactomyisin and vincristine. Sorry about the spelling. The dactomyoson didn't give him any side effects but he got really sick and weak with the vincristine. He had to undergo Three blood transfusions and two platelets. The drs. Said he will be unable to have kids which breaks my heart. He has been in remission for 10 yrs but at high risk of getting it back. He was in stage 2.

smaupin

carson00 said:

my son Carson is a survivor of Wilms Tumor
Hello, my son was diagnosed with Wilms Tumor at the age of 21 months old.It was the end of March 2002. He does have health problems that were caused by chemo. He has bladder, bowel, and a mild mental diagnoses. He just got dianosed with a slight case of Autism. We do not know if it was caused by Chemo or not. His right kidney had to be removed. His tumor was the size of a grapefruit. His bladder was normal size before chemo. Now it only holds 7 oz. As it has shrank. He had dactomyisin and vincristine. Sorry about the spelling. The dactomyoson didn't give him any side effects but he got really sick and weak with the vincristine. He had to undergo Three blood transfusions and two platelets. The drs. Said he will be unable to have kids which breaks my heart. He has been in remission for 10 yrs but at high risk of getting it back. He was in stage 2.

58 year WIlm's Tumor suvivor
I was born in 1949 and diagnosed with Wilm's Tumor in 1954. My right kidney was removed and I was scheduled for 35 doses of radiation. After my stomach was "burned black" (according to my cousin who told me about it about 5 years ago), my father stopped the radiation "against medical advice." He said that if I died it should be from the disease, not the radiation. The tumor metatasticized to my left lung 2 years later. A second operation removed the tumor and a small piece of my lung.

My old-school parents never told me I had cancer (perhaps avoiding having to acknowledge it). They told me I had a "growth" and that removing it cured me. While in college I met a nursing school student at the university where my operation was performed. She was a little skeptical of my description of a simple growth as the cause for my scars and she wheedled her way into medical records to check it out. At age 20, my future wife sat me down and explained that I had nearly died of cancer.

Other than quarterly trips to the doctor,many, many chest x-rays and one leg that was 3/4 inches shorter than the other and related back pain, I experienced few side effects as a youth. The biggest issue was not playing football. I begged for permission to play, but my parents said "only if the doctor okays it. In December of every year I would go to my doctor and ask him to sign my physical so i could play. Every year, he said "maybe next year." Finally, in December of my junior year in high school, he said "if you are still crazy enough to want to play you can give it a try." At age 17, with no experience in organized football, I tried out for varsity. After a slow start, i ended up playing offense and defense and kicking on a team that went undefeated and won a state championship!

Today, I have several lasting side effects. Most noticeable is the same ill-fitting clothes mentioned above caused by one skinny side and one "normal" side. I am so glad to see the posts on this blog. I have been saying for years that I cannot find blue jeans to fit and everyone thinks it is just an excuse for wearing only khakis. My spine is curved slightly with one side of each vertebra slightly larger than the other. I have had a "weird" medical history including sarcoidosis (very rare for a white male), multiple bilateral neuropathies. I also have a world class ability to generate colon polyps. In the past 7 years, I have had 8 colonoscopies and have had 49 polyps removed from my colon. My single year record is 13.

I had the good fortune of meeting the Dean of the Medical School of the university where I had the surgeries and was treated with cobalt radiation and, out of curiosity, he initiated a search for my medical records. They were located along with thousands of others from the same era as the result of a special project he launched. I have almost an inch thick notebook of records including a diagram showing how the radiation was administered nd a log of the treatments. The radiation was "pinpointed" using a lead shield nearly the size of a sheet of notebook paper covering the left side of my abdomen and the radiation bombarded the entire right side. Not surprisingly, all of the polyps mentioned above were found on the radiated portion of my abdomen.

One consideration that I think long term survivors should consider is damage to the capillary system. Apparently, the radiation used in this era badly dmamges the bodies ability to heal. The incision scar from the kidney operation (the radiated side) is jagged and very wide. The incision on the other side is a thin line. I have also had a very minor operation on my lower abdomen on the radiated side and the scar is wide and ugly. It took months to heal. I am told that I should try to avoid any kind of surgery on that side if at all possible.

Again, I am thrilled to find this blog. After reading through most of it, I thought I might be the oldest survivor, but I believe I was knocked out of first by at least one person. Like everyone, I have met many people struggling with a new or an old diagnosis of cancer. It has been very rewarding to be able to tell them I am a 50+ year survivor. It almost always brings a smile to their face and I hope people reading this blog will gain from my story as well.

Thanks for listening - and if anyone knows the name of a good tailor who specializes in hard to fit people, please send it along.... smaupin@accelrva.com

smaupin

jasaul said:

new diagnosis
It gives me so much hope as a mom, reading your email along with so many others. My 2 yr old daughter was just diagnosed with wilms tumor and this has been a frightening time. To read that there are so many people who have gone on to live long, productive lives gives me so much hope! Thank you for sharing!

Smile, Mom!
I was diagnosed with Wilm's tumors when I was 5 years old and, in the last 30 days, I have walked my daughter down the aisle and organized my 45th high school reunion! (Yes, I said 45th!). I remember being afraid, feeling "different" and missing out on some opportunities. But I also remember the nurses racing my wheelchair down the hall, the farmer from next door bringing me wild flowers from his field in his dirty overalls and the cheerleaders from my brother's high school letting me sit on the bench with them. Fighting cancer and radiation was part of my life and gave me the sense that i could accomplish anything if I tried hard enough. With your love and support, your daughter will be just as fortunate. smaupin@accelrva.com

smaupin

Twinb1953 said:

I think I hold the record
I just discovered this website after trying to do some research about the surgeon who saved my life. I was born in 1953 and diagnosed with Wilm's Tumor in 1955. I had a right nephrectomy at Mount Sinai Hospital by a surgeon named Dr. Ravitch. I was then given "26 x-ray treatments" as my mother called them. Funny thing is that I didn't find out about any of this until I was 21 years old. My mother just couldn't bring herself to talk about it. I always knew I had one kidney. The scar starts at just about my naval and goes around my right side to about mid-back. I asked about it for years but was told it was a sick kidney that had to come out. When I got married at 19 I told my doctor I was concerned about having children, so he did kidney function tests and said everything was fine. He still would not tell me what it was. (Old fashioned GP). At 21, I started my family. I went back to our GP and told a fib. I said that my OBGYN wanted to know what the clinical diagnosis was so he wrote, "Wilm's Tumor" on a prescription pad. I went to a medical library and learned everything I could about Wilm's. Two years later, at the age of 23, I felt a funny tingling sensation on my right back. I scratched it and it started bleeding. I went back to my GP who sent me to a dermatologist. He thought it was skin cancer. He looked at me and said it was obvious that I did not abuse the sun and asked me about my scar. When I told him what it was, he asked if I had had radiation treatments.....back to Mom. That is when she told me about the "x-ray" treatments. Hey, Mom, anything else you want to tell me?? Two years later, I developed another skin cancer. (both basal cell carcinomas) The last one was 34 years ago. Haven't gotten another one. I do have scoliosis though, (not severe), the Jessica Rabbit body (very small waistline). Laughed my butt off when I read it above. I had NO idea others were going through this. I have two herniated discs at L4,L5. I connected it to my career. Yes, I became a nurse. Currently a Director of Nursing. Love it and often wonder if I would have done something different had I not had Wilm's. Does anyone know anything about Dr. Ravitch? I am interested in hearing more Wilm's stories. I found all of above fascinating. By the way, Twin A was absolutely fine. We are fraternal twins.

I got you beat!
I am a little older and had surgery a little sooner than you..... but you're close!

I really enjoyed your post. As you can see on the posting I left on 2/17/12, our stories are very similar. I was scheduled for 35 "x-ray treatments" but my Dad made them stop after 25. I was told I "had a growth they needed to take out", not cancer. I married a nurse and I contribute not to my college, but to her nursing school. etc etc.

I was also very grateful to the doctors who saved my life and gave a "crazy" 17 year old cancer survivor the chance to live out his dream. (see other post). Unfortunately, he had a stroke about a month after he operated on me. He lived in a wheelchair, but was barely able to speak for 20 years and I visited him every few months until he died. He would break into a crooked smile and say "oh, Lord, oh Lord, oh Lord" every time he saw me. My gosh, I am crying my eyes out thinking about him right now. Her is to Dr. Howze and Dr. Drash of the University of VIrginia.

smaupin@accelrva.com

smaupin

emdicaro said:

Wilms, 40 years old now
Had left kidney removed in 1975, at the age of five. I have typical growth pattern of wilms tumor patient, spinal abnormalities, asymmetry with torso, infertile, and in the past 10 years diabetes has declared itself. Pancreas sustained abdominal radiation treatments and chemo for 15 months. At this time I receive no western medical help, I lead an alternative medical protocol. I don't feel "blessed" to have survived this long, it has been painful and isolating. Let's face it "Rare form of Renal Cancer People" we are on ticking clock that is about to stop and the foundation that is WATCHING our progress has no idea what they really have done to us, so they sit quietly observing because that's what all good scientist do with their subjects. No one knows what is in store for us. Its a farce.

Entitlement
I am a 58 year survivor of a "rare form of renal cancer" and I, along with my wife, 2 children and many friends, will be forever grateful to the people who saved my life.

I'm curious. What exactly do you think is a farce and how would you be better off today if it were not for scientists?

momon

Hi Joseph, I'm 29,diagnosed with adult wilm's last April 3,2013

Hi Joseph..I had my partial nephrectomy last April 3..my adult wilm's is stage 1,favorable histology..and its size is 2cm...I don't know if I should have an additional treatment for this...I have discussed this with my doctor but I don't think if he's sure..he referred me to another oncologist and was advised to have chemotherapy for 18wks.I asked for a second opinion..the doctor said I may not have an additional treatment cos it's only 2cm...I don't know what to do...but if I have a choice, I don't want to have chemo becos I'm scared that chemo may have the same damage as the disease.

hannahjayne1994

I was diagnosed with a wilms

I was diagnosed with a wilms tumour when i was 22 months, i was a stage 3. im now 18 and other than a dodgy immune system i am really health. The future worries and puts alot of stress on me. I was just wondering if anyone has had any late effects as they have gone through adulthood.  

 

Thanks Hannah 

p3ps1cola

mother of a wilm tumor survivor

Hello Joseph, My daughter diagnose with a Wilm Tumor shortly before she turn 2 years old.  Two days before she turn 2 yrs she had one of her kidney removed and 2 days after she started chemo.  By the grace of God she will be turning 22 yrs old this year and is doing good.

p3ps1cola

hannahjayne1994 said:

I was diagnosed with a wilms

I was diagnosed with a wilms tumour when i was 22 months, i was a stage 3. im now 18 and other than a dodgy immune system i am really health. The future worries and puts alot of stress on me. I was just wondering if anyone has had any late effects as they have gone through adulthood.  

 

Thanks Hannah 

my daughter had stage 3 wilm

my daughter had stage 3 wilm tumor when she was about 24 months and she will be turning 22yrs old this year.  She is a healthy young adult with occasional headaches but I think thats cause of life issues from trying to balanceso much at one time such as college, work and relationship.