I am a 35 year wilms tumor survivor

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.

My kidney was removed in
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!!

deedee0119 said:

I TOO AM EXPERIENCING THE LATENT EFFECTS OF TREATMENT
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

Dana I had my right kidney
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

nikkicole said:

Hi
I am also a Wilms Tumor Survivor. I am now 27 years old and I had my left kidney removed at age two. I am doing well and I feel very blessed.

41 Year Wilms Survior
Had my left kidney removed when I was almost 2 in 1969. Only had radiation. Would never known it was missing if I didn't have the scar. I am a dad with two kids.

I do have a question for all you 40+ yr. survivors. Last couple of years I have had a significant reduction in my energy levels and major hot flashes. My Dr. said my testosterone had dropped to the level of a male in their 70s and started me on testosterone replacement. Its been a couple of months now and I have only seen modest improvement. Has this happened to anyone else out there. I was thinking since they removed the kidney and the adrenal gland that it might be related.

beccabee said:

17 year old survivor
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!

Hi Beccabee
Hi - I'm 45 years old and I had wilms tumor when I was 4 yrs old. left kidney removed and radical chemo and radiation. ( 1960's style ) I always had that hard scar right around my belly button from the radiation. I have many late effects that really started when I turned 30. I started having digestive problems and experienced a couple of really bad blockages. I eventually had surgery to remove adhesions and scar tissue from by intestines. The hard lump near my belly button is now gone. I do still experience blockages, but I now know what types of food to stay away from. Overall, I can say i had a pretty normal adolescence. Lots of good times and my experience has given me a real zest for life! Most important thing is to know your own body and take charge of your own health. Many doctors need to be directed because we are definately special cases!

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!

hope!
Hi Jeff- thank you for your post. I am a mom of a beautiful, vibrant 2 yr old girl who was just diagnosed with Wilms of right kidney. It gives me so much hope and faith that I can read about ADULTS who have gone on to live productive, full lives! This is terrifying and reading your post really helps!

bubbles2011 said:

Hi Beccabee
Hi - I'm 45 years old and I had wilms tumor when I was 4 yrs old. left kidney removed and radical chemo and radiation. ( 1960's style ) I always had that hard scar right around my belly button from the radiation. I have many late effects that really started when I turned 30. I started having digestive problems and experienced a couple of really bad blockages. I eventually had surgery to remove adhesions and scar tissue from by intestines. The hard lump near my belly button is now gone. I do still experience blockages, but I now know what types of food to stay away from. Overall, I can say i had a pretty normal adolescence. Lots of good times and my experience has given me a real zest for life! Most important thing is to know your own body and take charge of your own health. Many doctors need to be directed because we are definately special cases!

Hi bubbles2011
I am 43 and had wilm's when I was nearly 5. I had right kidney removed, chemo & radiotherapy (also quite radical). Really interesting to read your story and others. I am interested in learning more about your digestive/intestinal side effects. Reply if you can. Thanks

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>

44 year Whilm's Cancer Survivor
I am a 44 year old male. I was diagnosed with 3rd stage nephroblastoma at 2 1/2 months old and treated at what was then a very tiny Orange Memorial Hospital in Orlando, Florida. That was pre-Disney Orlando in 1967 and well before the sophistication of what is now Orlando Health. Because the tumor was 3rd stage (larger than the kidney and had completely errupted) when it was discovered they opperated the next day removing the right kidney. The surgeon had said the tumor disentegrated into wheat chaffe like seeds and fell back into the abdomen so they sprayed the inside with some sort of chemical. Later I was exposed to high level radiation in equipment sized for adults and they did the best to wrap me in lead, etc. I received Cytoxin orally for at least a year. Growing up was relatively normal, however, I began developing scholiosis due to half the spine being hit and one side of each vertebrae was growing at a slower rate than the side that was not hit. I wore a brace to try and minimalize this effect. Mainly the brace just flattened out the side of the already weakend rib cage. The right cage only grew to about half the normal size of the other. At 18 they fused over 20 vertebrae and inserted 3 long s shaped herrington rods to hold the structure in place and follow the sway of the back. Fortunately this did not involve the neck or lower back so my range of motion is normal. On a possitive note, I awoke nearly 2 inches taller. I have now had this back longer than the first. I snow ski and water ski so I can't really say it has been an issue. Also at 18 I had my last solid stool. Every possible reason was studied but the final conclusion was that the section of the intestines that absorbs water finally gave out due to long term radiation exposure. Radiation can concentrate in the intestines. At 23 the right hepatic flexture of the large intestine (which was nearly behind where the removed kidney was) atrophied to near collapse and fearing a rupture they removed this via a colon resection. Because the skin on the right abdomen is as taught as a drum, they made a long incision toward the normal side. I thus have two parrallel scars down the abdomen. Since my last name is starts with an H, I always joke that if they go in again I will have them go perpendicular across those. When married in my 20s I discovered I was unable to have children and after 13 years of marriage and heartache (we went all over the country trying different things) we divorced for this and other reasons. She did not want to adopt and it was difficult being with someone so unhappy. Aslo in my 20s I devleoped high blood pressure and continue to take 10 mg of benezepril to this day. This may have nothing to do with the Whilm's and radiation as high blood pressure runs in my family. Although not very high, with one kidney they prefer it stay low. I also take tricor, but this has more to do with the pizza, beer, and hamburgers. Frankly, most men in their 40s take something. Recently I began getting weekly b12 injections and a monthly iron drip for annemia as it appears the intestines are loosing their capacity to absorb more nutrients and the chronic diarreah doesnt help. Ironically, this doesn't present much of a problem as I can eat whatever I want and at 5'9" weigh 130 pounds. Since I work out daily it is nearly all muscle. Not bad to look this svelte at 44. Generally I feel pretty good. My only worry, like many of you have expressed, is the worry of what other shoe is gonna drop...not so much cause I couldn't handle it, but because of the insurance worry. I have always managed, even though self employed, to have health insurance. It has become such a ridiculous issue in this country I finally changed parties from a life long republican to a democrat. We used to have a republic but it is rapidly becoming a plutocracy. Those of use who truly understand what a miracle health care is, and what a disaster the way our private system works need to speak out. I doubt my parents could have afforded our system now had been born more recently but before the important healthcare reforms.

Hello there
Im 35 and was just diagnosed 3months ago with having a tumor on my right kidney they where going to leave it cause it was not growing but my c t scan i just had showed it grew a hair so now im waiting to hear when my surgery will be and which kind they are going to do. My specialist told me im the youngest he has ever seen with this type of tumor on my right kidney its normally people in there 70s who get it. iv been having burning pain on my right hip area not sure if its from the kidney or arthritis. it also runs down my leg into my foot and feels like i walked on glass. but Im glad to see your doing well and that makes me feel better. I have three special needs children that need me so im fighting all the way to stay healthy. if any one else has had the same as me please let me know how things are now.

Thanks so much

B.J

tobeme1130 said:

maybe I am the oldest two time wilms survivor
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

Hey Eric!! Hearing about
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!!