I am a 35 year wilms tumor survivor

joseph38
joseph38 Member Posts: 5
edited March 2014 in Kidney Cancer #1
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
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  • TSMeiners
    TSMeiners Member Posts: 2
    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
    joseph38 Member Posts: 5
    TSMeiners said:

    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 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
    photoman Member Posts: 4
    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
  • BARBARATT
    BARBARATT Member Posts: 16
    joe i lost you . you can e mail me at [email protected] barbaratt
  • joseph38
    joseph38 Member Posts: 5
    BARBARATT said:

    joe i lost you . you can e mail me at [email protected] barbaratt

    Yes I will email you. It will come to you at my msn address. My real name is Tim Bain
  • cvb53
    cvb53 Member Posts: 6
    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.
  • deedee0119
    deedee0119 Member Posts: 5
    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
  • mkdsmall
    mkdsmall Member Posts: 2
    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.

    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
  • mkdsmall
    mkdsmall Member Posts: 2

    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!
  • bfredrickson
    bfredrickson Member Posts: 3
    infertile
    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
    emdicaro Member Posts: 3
    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.
  • emdicaro
    emdicaro Member Posts: 3

    infertile
    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

    what is the issue?
    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.
  • petal74
    petal74 Member Posts: 3
    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
  • amandavegas
    amandavegas Member Posts: 1

    infertile
    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

    sounds so similiar
    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.
  • ladeeT
    ladeeT Member Posts: 1
    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
    beckasweird Member Posts: 1
    ladeeT said:

    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!

    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...
  • lorzpav
    lorzpav Member Posts: 3

    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....
  • mudshark
    mudshark Member Posts: 7
    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 [email protected] good health and long life to all
  • mudshark
    mudshark Member Posts: 7
    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 [email protected] good health and long life to all