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I am a 35 year wilms tumor survivor

joseph38
Posts: 5
Joined: Feb 2004

Hello Folks, I am a 35 year wilms tumor survivor. I had my left kidney taken out when I was 2 1/2 years old. On Tuesday of I will be 38 years old. I am doing great. Would like to know if there are any other wilms tumor survivor here. Thankyou

TSMeiners
Posts: 2
Joined: Mar 2004

Hi Joseph! Congratulations! I am the mother of a 2 1/2 year old survivor of Wilms. He was diagnosed at 5 1/2 months. Do you mind me asking what stage you were? My son was a stage one and is doing great.

Tracy

joseph38
Posts: 5
Joined: Feb 2004

Hello Tracy,When I had my wilms tumor surgery back in 1968. I have been told by my folks that they where not told what stage my cancer was in. In fact at the hospital where I was at there was no wilms tumor support group. My folks had to depend on support from family & friends. Tracy I am very happy that your son is doing great. Tracy thankyou for asking me. You take care & have a great week.

photoman
Posts: 4
Joined: Mar 2004

Hello Joseph,

I am a 42yo survivor of Wilm's Tumor. Surgery in '64 along with radiation and chemo. At the time I was in M.D.Anderson (end of '64/early '65) there were eleven other kids there like me and I'm the only one that made it. I'm glad to be here!

I understand that the survival rate for Wilm's Tumor is MUCH higher now and that's good news!

David

eaprende
Posts: 1
Joined: Jan 2011

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

AmynBri
Posts: 6
Joined: Feb 2012

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BARBARATT's picture
BARBARATT
Posts: 16
Joined: Mar 2004

joe i lost you . you can e mail me at btbtbtsting@aol.com. barbaratt

joseph38
Posts: 5
Joined: Feb 2004

Yes I will email you. It will come to you at my msn address. My real name is Tim Bain

cvb53
Posts: 6
Joined: May 2009

Would like hear from someone who has experienced early menopause or chronic pancreatitis along with scoliosis and other problems due to scar tissue from radiation in the 50's-60's Thanks.

deedee0119
Posts: 5
Joined: May 2009

CVB53 - in response to your post regarding latent side effects -- I too am experiencing them. I am in remission for 43 years now. Was diagnosed with Wilm's when I was 17 months old -- had nephrectomy, chemo & radiation. Doctors told my mother I would never get my period, develop breasts or have children. I started wearing bras in the 5th grade -- because I needed them, I got my period when I was 9 years old, and am the proud mother of a 19 year old and twin 18 year olds (all boys)!

I first started experiencing side effects when I was 18 years old. I developed high blood pressure and have been on medication every since. I started to notice that my clothes were not fitting me correctly around the time I was 16 years old. I remember being taken back and forth to different doctors because they thought I had scoliosis. I was originally diagnosed with scoliosis; however, later on in life, I would find out that it wasn't scoliosis -- but that because of my treatment many years ago -- the right side of my body did not develop as well as the left side. Now at 45 years old, my right hip protrudes out more than my left and slightly curves to the front. I still have the clothing problem. I need a bigger size to accommodate my hips, but pants are always huge around the waist. Not to mention the fact that I have constant lower back and leg pain. I can't sleep on my stomach and have difficulty laying on my sides. I sleep with a ton of pillows to get comfortable.

I am also experiencing a lot of shortness of breath and rapid heartbeat. I can be in the middle of a sentence and all of a sudden run out of air. I have always been followed for these things at Sloan Kettering, but as with anything else, when I became a wife and a mother my ailments got put on the back burner. Over the last year or so, my issues have been getting worse. I've had to go through physical therapy for my back and I have seen a pulmonary doctor because the shortness of breath has increased. He tells me that I am breathing at less than 50% of my lung capacity and that he can find no physical reason why. He sent me to a cardiologist for testing, I guess in the hopes that he would find something to justify the shortness of breath. There I found out that my resting heartbeat is 147. So he wanted to send me for a stress echo...that has yet to come to pass. My husband was diagnosed with metastatic renal cell carcinoma and my time and energy have been all on him. My ailments are once again on the back burner because he is much more important than me right now.

I, too, am curious to know if anyone else is experiencing the same issues and if so, what is being done to help.

Sorry to go on and on, but I thought if I put it all out there that it would be easier for others to discuss their issues.

Hope this finds everyone who reads this well.

God bless,

Dana

mkdsmall
Posts: 2
Joined: Jul 2009

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!

leejcarr
Posts: 4
Joined: May 2009

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

JeffMyers
Posts: 5
Joined: Jan 2011

Dana I had my right kidney removed at 3 in 1971 and received cobalt. I too have scoliosis and my pants fit small in the waist and tight on my thighs. thought it was waterskiing at 11. I developed high blood pressure at 18 too. Had a "Stomach bug" right before it occured. Stayed on BP Meds for a few years and got off of them. Interesting, thanks for the post!!
God Bless you too!
Jeff

mkdsmall
Posts: 2
Joined: Jul 2009

Hello,
I just came across your post. I am 38 years old and had a whilms tumor removed when I was 3 years old. Last year I found out that I was infertile and in early menopause. The doctor's report that most likely my egg supply was damaged by the radiation and/or chemo that I received during my treatment.

Would love to connect if you are still reading this board.

Michelle

petal74
Posts: 3
Joined: Feb 2010

Hi,
I'm overjoyed to actually find some people that have gone through the same issues, I've struggled to understand for many years.
From what I've been told, I was diagnosed with a Whilms tumour aged 4. Now I am 35, experiencing the same menopausal systems, was on synthetic HRT since a teenager and have now gone over to BHRT (natural). I would love to connect with other people experiencing the same fertility questions.

Tash

mean56
Posts: 11
Joined: Nov 2009

I started menopause around 36. I also had 3 children. They were the biggest awesome surprise. I had Endometriosis on my good side when I was 21. Had surgery to remove adhesions when I was 17. 

I can only give my answers based on my experience.

 

Mary

mean56
Posts: 11
Joined: Nov 2009

I started menopause around 36. I also had 3 children. They were the biggest awesome surprise. I had Endometriosis on my good side when I was 21. Had surgery to remove adhesions when I was 17. 

I can only give my answers based on my experience.

 

Mary

cavenezia
Posts: 2
Joined: Aug 2010

Hi,

I was diagnosed with a Wilms tumor in 1966 at age 7, and this was only discovered because earlier in the day I had accidently fallen from the emergency exit of my moving school bus! My parents were told that I wouldn't survive the month. I had surgery followed by a 3 year regimen of Cobalt radiation and Dactinomycin (experimental at that time) at Riley Hospital (John Donahue, M.D.) in Indianapolis.

I survived pancreatitis and ARDS at age 29. I had thought that the pancreatitis was caused by overindulgence (alcohol, smoking and poor diet...at the time, evidently not showing much gratitude for having been given a second chance!), gall stones and had been taking prednisone for a skin rash, too, just prior. I didn't realize that being a Wilms survivor might predispose one to pancreatitis.

Had thought I was unable to conceive, but eventually had 2 children (at age 39 and 41) and shortly thereafter went into Menopause.

My current issue is related to my scoliosis. It was never a problem (aside from not being able to find jeans that would fit my odd hip-to-waist ratio) until recently...now, because of the muscle atrophy from radiation and also, I imagine, because of my age, my spine is sort of collapsing to the side. It causes major muscle spasms and I'm unable to walk or run more than 20 paces without collapsing. My Orthopedic surgeon has recommended Pilates...and if that doesn't work, surgery.

This has been an amazing rollercoaster of a journey...lots of bad coupled countered with lots of good. I still LMAO when complimented on my Jessica Rabbit figure and unnaturally thick mane of hair! (I usually credit it as a fringe benefit of 60's cancer treatment.) Now, if I can just manage to keep walking...

C

michelej3
Posts: 4
Joined: Oct 2010

Hi,

I was diagnosed in 1972 at age 4 years 11 months. So glad to read about other long term survivors of Wilm's. I had surgery, radiotherapy and chemotherapy. Was diagnosed with early invasive cancer of the cervix at age 22. I suffer from scoliosis, back pain, right sided atrophy and discomfort. I also have uneven breasts and a rotated and uneven pelvis. Despite all of this life has been good to me. I have 2 beautiful children and a loving husband. I would love to hear from other long term survivors (especially in Australia where I am from)

M :)

p.s I too have always had trouble getting clothes to fit properly!!

JeffMyers
Posts: 5
Joined: Jan 2011

I am a male who had surgery in 1971 at 3 years old. I have scoliosis and back pain time to time. I have the torso uneveness too. Me too on the Life has been blessed!! God saved me at 15, 2 of my daughters are saved and I am a deacon and sunday school teacher in my church. Overall Gods been good!!
Me too on the clothes fitting proplerly. My thighs were big compared to my waist. I always thought it was from skiing at an early age.
Jeff

bubbles2011
Posts: 2
Joined: Mar 2011

Hi - I just stumbled apon this website and I'm also happy to see other stories very similar to mine. I was diagnosed with advanced stage wilms tumor at the age of 3. I had my left kidney removed and went thru radical chemo and radiation. I believe I had a recurrence as well. I also have the curved spine, uneven breast development, caved in ribs on the left side and protruding right hip. It made me extremely awkward and uncomfortable my entire life. Could never wear a bikini,,etc. But, I was always the optimist and was lucky to have a pretty normal and happy life. I do not have children due to my damaged ovaries and uterus. I started experiencing real late effects when I turned 30. Started having intestinal blockages that sent me to the hospital. It was that visit that revealed I had two tumors on my right kidney. I had surgery and thankfully they were benign. Also had scar tissue removed from my intestines at the same time. I have trouble gaining weight and still have to watch what I eat in fear of blockages. At 40 yrs old I discovered I had severe mitro valve prolapse. I had surgery to repair that valve. I am wondering if that is also a late effect. I also go for colonoscopies every couple years to have polyps removed. ( another late effect ) More recently, I'm experiencing some bladder issues. passing blood and blood clots, urination issues, etc. Currently visiting doctors for this one and doing my research. Any ailment that I feel I always think,,, is it due to the radiation I rec'd in the 1960's? Knock on wood, I don't have any back pain. ( even with the curved spine ) I've always been very active. Excercising, weights, etc. Maybe this has helped over the years. I do have osteopina, so I also take calcium & vit. D supplements. If anything, I've learned that as a survivor you need to be your own advocate and be proactive with your health. I feel more tired these days as well. That could just be my lifestyle and middle age! can't blame everything on my past treatment! Good luck to everyone!

bfredrickson
Posts: 3
Joined: Aug 2009

hi My daughter was diagnosed with Wilms, when she was 5.Stage 4 with unfavorable histology, she went on hormones when she was ten.To have her period and to grow.She is 23 years old now.She is infertile and was just diagnosed,with pulmonary hypertension.Always had trouble with pants her waist is 17 inches different than her hips.she is now a cyto tec.Can't love her enough,but middle daughter has always felt not treated the same or loved enough.She is only 19 months older.She and I have always have trouble over this, she has no kids yet. thanks bfredrickson

emdicaro
Posts: 3
Joined: Oct 2009

The daughter that can't have children or the daughter who feels she was not loved enough? I can't have children and I have three brothers, one felt that the love was not being shared equally amongst all the children. He demonstrated his feeling through violent behavior and verbal abuse. Now as an adult he understands that his health and experience in a healthy body far exceeds any slight he may have felt from a parent. He had to reconcile his feelings with himself, not with the parents. As far as not having children and having a freakishly small waist, it never bothered me. What is most important is staying healthy through diet and exercise and taking this particular life and shaping it into something unique and special. Something the world has never seen.

mudshark
Posts: 7
Joined: Dec 2009

What's all this about not being able to have kids? I'm a 53 year survivor of Wilms and I'm happy to say that I have a daughter and grand daughter.Maybe because I was diagnosed before chemo was invented---who knows? Neither has had any kidney problems, Thank you LORD

amandavegas
Posts: 1
Joined: Mar 2010

I was diagnosed at 8 in 1988, stage 4 with metasis to lung, unfavorable histology, and it spread to my liver. I had 21 days of radiation and 18 months of cytoxin, adryamiacin, vincristin, actinomyacin (not sure on spelling of any of those). I was told I was infertile and could never have children. I can say proudly that I have a beautiful 4 year old, adopted, daughter....AND 2 biological boys, 2 and 8!! However, I seem to be experiencing so many side effects the older I get. for 22 years I have tried to live as if I was "normal" and invincable. I had very difficult pregnancies that resulted in premature babies....and many many long weeks of all types of drugs in the hospital to prevent the labor. I have a very "lopsided" body as I call it. My left side where I have no kidney, caves in looking like I'm missing half my abdomen. Thank goodness hip style pants are in fasion! my husband loves my quirky body just fine, although I am HIGHLY self concious about it. Dating days were filled with shame. I was pretty, thin, active, smart...I had everything...but I could never be one of those "pretty girls" exposing mid section, even in a bathing suit. But now, more than the psycological effects, I am in so much pain. several months ago I started experienceing major back pains and sciatica issues. Everything I researched brought me to herniated disc...but I never injured myself. It is not until my researching tonight that I am linking my issues to side effects...I should have known...everything in my life circles back to side effects. I am having an X-ray in 3 days, but now I think I know what to expect...not happy. But it hurts sobad. I am an active professional woman busy with 3 kids, I don't have time for this. Other side effects include diabetes, very high heart rate for no reason, processing issues which I discovered in college and was then classified as having a learning dissability, and I have scar tissue build-up around my heart. Who knows what I may find over the next years. But I always expected that I would not live as long as "normal" people. I am so happy to see survivors on this that are 50 or 60.

All of us Wilm's survivors need to share stories on a central group of some type. Please repond to me if you are interrested or know of one that exists.

Please respond if you can help me solve my mystery of the spine issues. I'm really scared. I need to direct my doctor in what to look for.

emdicaro
Posts: 3
Joined: Oct 2009

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.

JeffMyers
Posts: 5
Joined: Jan 2011

My kidney was removed in 1971 with wilms. I too have the spinal abnor,abnormalities and torso asymmetry. Being age 3 when receiving treatments I have had three daughters. At that time Wilms was very rare and Treatments were very experimental. I have to say I feel Blessed to be alive. I have seen 2 of my daughters accept Jesus as their Saviour and I Teach a Teen Sunday School Class at Church. One thing I have noticed is eating has to be at precise intervals or I have stomach problems all day. Another thing is Stomach bugs get me way down! I also had my Gall Bladder removed. Overall I'm glad I've had the last 39 years of Life looking forward to Heaven!!

smaupin
Posts: 4
Joined: Nov 2012

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?

ladeeT
Posts: 1
Joined: Mar 2010

I never knew how many people there were out there who had Wilm's tumor as kids. I'm 14 years old, and was diagnosed 2 weeks before my 4th birthday. I have been in remission for near 8 years. I would certainly like to hear from other Wilm's survivors out there (: thank you!

beckasweird
Posts: 1
Joined: Apr 2010

Hi! I am a 24 year old survivor, diagnosed when i was 6, stage 4...
and had my left kidney removed + chemo and rad treatment. and I just really want to know for sure whether or not i can have children... Ive always assumed i couldnt, but i have been looking it up and its given me a spark of hope... anyway, if anyone has any experiences with this issue id love to hear about them...

lorzpav
Posts: 3
Joined: Apr 2010

Hi, I am a 24 year old survivor of Wilms tumor aswell. I was diagnosed when I was 12 at stage 4. I am wondering the same question as you, whether I can have children. The doctors never told me or my parents that I couldn't but after reading lots of people stories I'm having lots of doubts. I'm also really scared of the long-term effects that other people are talking about. I haven't experienced any yet and don't really know what to look out for....

zumomma
Posts: 6
Joined: Jul 2010

I had WT at age 5 in 1973. I remembering hearing the drs. tell my parents that they thought I might be able to have children, they just didn't know for sure, or if they would be "normal." I had no trouble conceiving; the pregnancies were tragic, complicated, and relatively normal. I buried my first 2 sons due to extreme prematurity. I have 2 boys and 2 girls. I needed to have a procedure done for the last 4 pregnancies to help keep me from going into labor too early. The kids were all born 3-6 weeks early, even with the intervention, but only 2 had to stay in the hospital ( a week each). All of my kids are "normal" LOL! They are all enrolled in a non-invasive study for children of WT survivors. No one can know for sure about the infertility/pregnancy stuff until it happens/doesn't happen. There doesn't seem to be a yes or no answer. I think much of the complications for pregnancy stem from which kidney was removed, treatments used, and other factors such as relapses, stage of the cancer, and just plain old family history.

I'd be glad to talk to you more about this.
Zuma

erin3746
Posts: 3
Joined: Sep 2009

I am a father of 6 1/2 year old with wilms tumor right kidney removed she now has it in the lungs we take here for her first 5days of chemo.she is stage v would be nice to speak to you and maybe you can give me some hope :)

Hope to hear from you
Rick
Medic528@gmail.com
My daughters web site
http://www.caringbridge.org/visit/erinperez

cazza88
Posts: 1
Joined: May 2011

hi i am a 22yr old survivor i was diagnosed with aggressive stage 3 when i was 7, i was constantly told by doctors i should prepare myself not to have children and spent my years upset about it! i am now glad to anounce i am 22weeks pregnant with my secound child and so far so good! this cancer does run in my family so both my children need to screened every 3 months and i pray everyday they will not have to go through that! i would also like to hear from other parents, if they worry something will come back now you have your children to look after im terrified. also i would like to know if anyone find themselves physcologically effected by the cancer, i was bullied due to mine and my body ended up quite disformed from it i am extreamely selfconcious and suffer panic attacks, thankfully iv been with my fiance for 5years and helps me alot.hope to hear from someone soon ...

JeffMyers
Posts: 5
Joined: Jan 2011

I am a 39 year Survivor and have a daughter that turned 15 today. Had my right kidney removed and lived life pretty normal.

mudshark
Posts: 7
Joined: Dec 2009

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

Zeyad
Posts: 3
Joined: Aug 2011

Hey paul. Im glad you are doing well!!! I am 22 and had wilms when I was 5. Want to ask, have you been able to have children? This is a big concern for me, I'd appreciate any advise ..

maryroyaltbach
Posts: 1
Joined: Jan 2014

53 1/2 yr survivor willl be 53 in March sending short test msg to make sure it reaches you before I write in full to your 2009 message 

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

mudshark
Posts: 7
Joined: Dec 2009

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

mudshark
Posts: 7
Joined: Dec 2009

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

mudshark
Posts: 7
Joined: Dec 2009

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

mudshark
Posts: 7
Joined: Dec 2009

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

mudshark
Posts: 7
Joined: Dec 2009

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

tobeme1130
Posts: 2
Joined: Oct 2010

Hello Paul glade to see there are more like us out there. About me i was born on November 30 1960. MEDICAL BACK GROUND: On April 9 1963 I had a right nephrectomy followed by extensive radiation and chemotherapy for a wilm's tumor. On February 14 1964 I had surgery for a recurrence again followed by extensive radiation and chemotherapy. On April 5 1989 I had cholecystectomy, operative cholangiography, enterolysis and release of duodemal adhesions and appendectomy. On February 13 2009 I had emergency surgery which involved cystoscopy, resection of left ureteral orifice, remove of stone and placement of a double-J stent. What problem have you had along the way? best wishes Eric

Zeyad
Posts: 3
Joined: Aug 2011

Hey Eric!! Hearing about wilms tumor survivors is great. I've never met one before.. I am 22 and had stage 4 wilms tumour when I was 5. Question about fertility. Have you had any problems with that? Any info would be appreciated.. Thanks!!

adeptbeth
Posts: 1
Joined: Oct 2011

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.

Twinb1953
Posts: 1
Joined: Sep 2012

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.

smaupin
Posts: 4
Joined: Nov 2012

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

karencrisp
Posts: 3
Joined: Apr 2010

I am new to this site and discussion board. I am the carer for my husband who is stage IV grade 3.
I just have to say you are a miracle. Congratulations to you. You are a true survivor and a model for hope for all out there
Karen

JoannePasillas's picture
JoannePasillas
Posts: 10
Joined: Sep 2010

Hi ther my husband who is 37 yrs old was just diagnosed in July of 2010 with wilms and I want to find anyone else who has had wilms in their adult hood....

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