I am a 35 year wilms tumor survivor

hedasa

I have Wilms as an adult

Hello everyone,  I had my left kidney removed on 10-30-2019 at 39 years of age. The surgery was done in Cd Juarez and although no one wanted to sign on the diagnose, all of them said it looks like Wilms. I have an appointment in El Paso next 11-19 to see if this oncologyst can help. I have been asking around and no one seems to have dealt with Wilms in adults. Can someone please give me some information that can point me in the right direction? I am an american citizen so I can travel to the US, I was visiting Mexico when this event went down. 

Thank you and many blessings to everyone.

Apaugh

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

be kind to yourself..

I am sorry to hear you have had such a hard time.  The SE of chemo and radiation are endless an timeless.  I am sorry to hear about your husband.  I had chemo for my breast cancer.  I aleady had high BP and then when I had my kidney removed in July, it went off the charts and I about died.  I was seen buy cardiologist in hospital and they about killed me again.  Finally I found my own cardiologist who delt with the "electronics" of  your heart and he put me on another BP med and no more short of breath or Afilb.  I am doing really well now.  Dont let your health go, it might be a simple fix by a med.  If your not well, you cannot take care of your family.   Take time for you.  

Hugs and prayers going up,

Annie

Apaugh

cavenezia said:

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

Small world

Thank you for sharing your story.   I was only 2 yrs old when my cousin, age 7, died from a Wilms tumor..  He went to Riley as well.  That would have been in 1964.  According to my mother, within a short period of time, he developed a very large belly yet the rest of him was skinny.  He had a huge amount of pain on his right side and the doctors thought his appendix had ruptured.  They cut into the tumor when they opened him up exploritory style.  My mother said at that point they took out what they could and closed him back up and gave him 1 yr to live.  He lived 1 yr. to the day.   My mother said he endured so much pain during his chemo and radiaton treatments.    

You are all so brave to have endured all this.  

The side effects of chemo and or radiation are horrible.  

Prayers

Annie

Apaugh

hedasa said:

I have Wilms as an adult

Hello everyone,  I had my left kidney removed on 10-30-2019 at 39 years of age. The surgery was done in Cd Juarez and although no one wanted to sign on the diagnose, all of them said it looks like Wilms. I have an appointment in El Paso next 11-19 to see if this oncologyst can help. I have been asking around and no one seems to have dealt with Wilms in adults. Can someone please give me some information that can point me in the right direction? I am an american citizen so I can travel to the US, I was visiting Mexico when this event went down. 

Thank you and many blessings to everyone.

Prayers going up

You are close to MD Anderson.  Please go there.  

Keep us posted

mg58302

31 yr survivor

I was diagnosed with stage 2 Wilms in 1988 at 8 years old. It was detected after my pediatrician decided to do further testing after a bladder infection. Thankfully they found the cancer! I had 2 tumors (2 cm & 4 cm) in my right kidney. Primary Children's in SLC removed my right kidney just days later. I went thru 6 months of chemo & no radiation. Like most chemo patients, I lost every bit of hair on my body but thankfully I had a cute bald head! I have taken part of late effects studies since I can remember & stay very close to my doctor. A couple years ago I did genetic testing & am happy to report I do not have any genetic markers that would be passed down to my kids!

I had been an extremly healthy child & adult with the exception of my cancer. I was also blessed with 3 wonderful children who have also been healthy their whole lives. However, I just turned 40 & am finding out that I might now be pre menapausal. UGH! How do you ladies deal with this? I know it's bound to happen eventually but I didn't expect this for several more years. My doctor now has be on B12 shots & progesterone cream, along with enough vitamins to make you puke. Any suggestions you all have to help get thru this phase in life? Is this common for Wilms survivors to experience early menopause?

Mikki

alwayssmiling62

OMG! Wow, I just found this page. Thanks for putting this up.

Joseph, Congrats! I know it's been a while since you posted. I too am a Wilm's Tumor survivor. I am currently 41 in 2021 and that happened when I was 2. I have to go read all your posts. I didn't know we had a group. You guys are all amazing!

Many blessings to all!

-T

alwayssmiling62

https://csn.cancer.org/discussion/comment/1667164#Comment_1667164

We are the same age!

suzybee

Hello all,

I was diagnosed with Wilms tumor in my right kidney in 1955 at 2 years old. Fortunately it was found early and I did have radiation treatments (I guess there was no such thing as chemotherapy at that time.) I remember going for follow up xrays several times a year, I guess to check for recurrences, but so far so good. I did have severe scoliosis which appears to be a side effect. I'm wondering if there are any other survivors from the fifties?

Good luck and best wishes for good health to all!

SB

awgarnett

https://csn.cancer.org/discussion/142200/i-am-a-35-year-wilms-tumor-survivor

I believe my father, Steve Garnett, is the longest survivor of Wilms Tumor to date.

Sadly, he passed away yesterday - Thursday, February 9, 2023 - at the advanced age of 95+, having lived with just his left kidney for more than 77 years! He was diagnosed and had his kidney removed at age 18 in 1946. No chemo, no radiation. Just the surgery! He led an amazing life & partied like a rock star throughout his youth!

I'd love to be proven wrong! At any rate, I hope my Dad's long and wonderful life gives lots of hope to those who are newly diagnosed or are doing their best to outlive my Dad!

Thanks.

suzybee

https://csn.cancer.org/discussion/comment/1703879#Comment_1703879

I am so sorry for your loss. But how wonderful that he was able to enjoy such a long and fulfilling life! I had my surgery in 1955 so he beat me lol and I believe there is a lady in Florida or maybe south carolina (somewhere around there lol) who had her surgery a few years before me also; 1948 i think? She writes children's books.

Please accept my condolences for you and your family. I will keep you in my prayers.

gmachine82883

Hello everyone my name is Gene I'm 40 years old and I live in Maine I was diagnosed with Wilms tumor when I was 3 years old and had a nephrectomy of my left kidney followed by 6 weeks of radiation and chemotherapy. I have been in remission ever since. As many others have stated, I also suffer from scoliosis and lower back pain as well, which has seemed to increase in the last year. I also am infertile and was diagnosed with azoospermia and unable to have children likely due to the chemotherapy and/or radiation treatment I had as a child. This is one of the hardest things to come to terms with although I am a firm believer that everything happens for a reason it's hard to know I most likely will never be able to father a child of my own. Overall I'm fairly healthy other than typical aging factors and I thank God everyday and am grateful to also be celebrating 6 years of sobriety. I have a good life today. I stumbled across this this page as I was researching long-term effects. 

Foreigner85

Hi all, 38yr old survivor here, I'm really glad to have found this thread! I've never met other adult childhood cancer survivors, let alone survivors of Wilm's. I was diagnosed with Wilm's when I was an infant. Between the ages of 6mths and 2 years I underwent treatment - nephrectomy of the right kidney, chemo (Dactinomycin), and radio (cobalt).

My physical health over the years has been mostly ok, I do have mild scoliosis and a benign heart murmur but so far so good. I'm a little concerned about what will happen when I get older and not knowing if doctors where I am will be equipped to manage this longer term.

Mental health-wise however is another story. I've been diagnosed with co-morbid anxiety and ADHD, which I've dealt with for as long as I remember (though I don't know if that can at all or even partially be attributed being a cancer survivor). I also realised late in life that due to my very young age during treatment and the importance of that time in early childhood development, the experience has potentially impacted in the way I relate to people. It's still something I'm exploring in therapy, and would be interested in hearing if others have had similar experiences?