I am a 35 year wilms tumor survivor

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

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

cvb53 said:

54 year survivor of Wilms
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.

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

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

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!

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.

mkdsmall said:

early menopause due to whilms tumor treatment
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

dito: early menopause symptoms, whilms tumor survivor
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

wilms
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 said:

wilms
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...

wilms
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....

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