Adult Wilms Tumor

[Julie1226]

Hi- My name is Julie and I have recently been diagnosed with Adult Wilms Tumor.

I woke up with flank pain on June 1st, went the ER. They did a CAT scan and found a 8cm tumor on my right kidney. Within two weeks I had two opinions from urologists and they removed my kidney. When the pathology report came back, they said the margins were clear and thought it was RCC, but they sent the slides over to Johns Hopkins to make sure. JH diagnosed it on Monday as Adults WT.

I have an appointment with JH on the 27th. From what I understand, I will have to have chemo. I don't know the stage of the tumor, but based on what I know it would fall into stage I. And all tests came back negative for spreading.

Does ANYONE know ANYONE that has/had Adult's WT? It is a very rare type of kidney cancer for adults. Children mostly have it.

[charmkit2003]

Hi Julie,
My name is Lisa, I was diagnosed with Adult Wilms Tumor in the spring of 2002 it was stage 3 when it was found and in between radiation and chemo it went to stage 4. IN 2002 I was 32 so everyone thought I had the other type of kidney cancer that elderly people get. My pathology report came back and the doctor had them rerun the test two more times to make certain it was right. My question is whether you had any involved lymph nodes, if you did it's at stage 2. The chemo that I had to take with mine was vicristine, dactymiacin, and adriamiacin. ( I hope the names are spelled right :~) My oncologist at the time had never even heard of anyone being treated for adult wilms so he had to call all over the US to try and find how I should be treated. He is considered one of the top ten oncologist in the world for treating kidney cancer, thats when I knew how very rare in adults it was. I went online and all I could find was the kids version up until the last eighteen months. Let me know how things progress.
Good luck,
Lisa

[Julie1226]

HI Lisa-

I am sorry that you, too, are dealing with Wilms, but I am glad to have found someone that has this as well.

I have Stage I with Favorable Histology. My surgeon did not take any lymph nodes during the surgery because he thought I had RCC, but he said that none the lymph nodes looked suspicious. My tumor was 8cm, and they were able to take it all whole (no spilling) and I had clear margins.

My pathology report was sent to a Dr. Epstein at Johns Hopkins, who is one of the best pathologists in the world for urology cancers. He diagnosed Wilms Tumor. Then I had my slides sent to Dr. Elizabeth Perlman in Chicago for a 3rd opinion for she specializes in Wilms Tumor. She has confirmed my diagnosis.

I have done A LOT of reading on Wilms Tumor. I have been in contact with the NWTSG as well as dozens of parents that have had to endure this with their children. I am being treated at Johns Hopkins in Baltimore. Though my doctor there has never seen it in an adult, there is a pediatric oncologist there that has had several cases and as old as 19, which is an adult. He is on my team of doctors treating me.

I am being treating according the the NWTSG protocol-5 for Stage I, FH. That is 18 weeks of Vinicristine and Dactomycin.

Did you have a nephrectomy? How big was your tumor? Why did they consider you a stage III? Was there mestatsis? What made you upstage to IV? HOw are you doing now?

please email me, I would love to stay in touch with you.

jreiz@comcast.net

[keriann]

Hi!
I am a 25yr old who had adult wilms tumor 3 years ago. It was definately the hardest thing I ever had to do and I will never forget it. After about 18 months of suffering and numerous trips to the doctors office and the ER, I was finally diagnosed with stage 4 wilms tumor. It was 6 inches wide, covered my whole kidney, and had spread to my lungs. I had my kidney removed 3 days after diagnosis, and lung surgery shortly after. I had 6 rounds of 24hr/5 days a week chemo,(it was supposed to be 8 but I was too sick), and 6 weeks of radiation. Because none of the doctors in the adult system knew anything about wilms tumor, I spent my full year of treatment a patient in the Janeway Childrens Hospital. My doctors, Dr Jack Hand and Dr. Lynette Bowes also consulted with other people from the States, Canada, and Europe. I was originally scheduled for a stem cell transplant after a extremely high dose chemo treatment but again, I didn't make it. My body was soo sick that it took over 6 weeks for my platelet count to reach normal numbers after chemo. I found radiation to be a breeze! My margins were also clear after my kidney was removed. He said that he just kind of scooped it out like ice cream!
Today I am still cancer free for the last 3 years. The doctors are estatic! The day I left the hospital they told me that there was an 80% chance that my cancer would return. I truely believe that a healthy attitude towards healing really improves your chances. My chance for survival was slim from day one. There was another factor that made curing my cancer extra difficult. It had something to do with the fact that my cancer cells were disorganized instead of organized. Does anybody know anything about what that is? Watch out for steroids during treatment! Dont let them give you too much! The excessive amount that I was given caused avascular necrosis (death of bone tissue) in both my hips, requiring a bone transplant in both hips. I live with the pain every day.
I would love to hear from both of you! I am so glad I discovered this site. As I'm sure you guys know it has been hard to find people who can relate to this disease. Good luck Julie! Be sure to keep us posted on your progress. Years down the road this disease will be just a blip on the radar!
Talk to you soon!
Keriann

k_wilcott@hotmail.com

[jellybelly1851]

Hello, my daughter is 20 years old and diagnosed with stage iv wilms tumor four weeks ago. She has had her kidney removed. Pathology stated favorable 8.0cm. She is undergoing Chemo and then radiation as she has a very small hot spot on her PET scan on the outside of the right lung. Toughest thing I have ever had to deal with. I can't imagine what she must be going through. My prayers are with each of you.

[brainman]

Hi jellybelly1851. I am very sorry about your daughter's cancer. I am not familiar with Wilms Tumor. Hopefully, someone who knows more about it will reply. The others who started this thread back in 2006 have not posted since then so I am not sure you will hear from any of them. Every time I say this to a person, someone always comes out of the past so hopefully that will happen this time as well .

You and your daughter are in my thoughts and prayers.

[jellybelly1851]

All we can do is pray and I thank you for your prayers. I appreciate your concern. I hope that someone will respond. I would love to hear their victory stories. We are just getting started and would be nice to talk with people who have been there and know what to expect. Again, thank you for responding.

[Julie1226]

Hi Jellybelly1851

I am the original poster in this thread. I was diagnosed with Wilms Tumor, Stage I in 2006 at 34 years old. Today I am almost 2 years in remission, and doing well.

I would be happy to give you any information/advice you need. Wilms Tumor in adults is EXTREMELY rare. I have been contact by 4 other (all women) since posting this. Two were dx years before me and were doing great. One woman was about 3 months behind me in treatment and doing well. And the 4th was doing well a few months ago.

I was treated at Johns Hopkins in Baltimore. I went through chemo (no radiation) for 19 weeks.

Feel free to email me (or anyone else dealing with Wilms Tumor as an adult) at juliereiz@gmail.com

Will keep your daughter in my thoughts and prayers.

[brainman]

Hi Julie, thanks for the reply. I am glad you are doing so well.

[delly1234]

My name is Michael, and I am in Nebraska. In October, I was diagnosed with Right Renal Cancer. I am 29 years old, and I would consider myself to have very good general health. After a radical nephrectomy (sp?) the pathology report came back as Wilm's Tumor. If anyone has any advice or anything I would appreciate it. The oncologist is still deciding on staging, but he said it is likely between stage I-II with favorable histology. He said he needed to ask the surgeon some questions first. Anyway, this has been scary, needless to say, but the oncologist sounds very confident. I appreciate reading all of your stories, which give me encouragement.

Thank you
Michael

[gulsevi]

Hi everyone,
It is good for me to find this site because I dont know any people suffering this illness in my city. My name is Gülsevi and I am from Turkey,Ankara.
In November 2006 I was diagnosed with Right Renal Cancer. After the radical nephrectomy the report came back as Wilms,my tumor 10cm.After 18 weeks of cemotherapy with the medicines named Actinomycin,adriamicycin,vinkristin and etoposid with a break for radiotheraphy for 12 days, doctors give me a small relief break because I was so tired and have no eyebrows and hair. After the usual controls doctors found that the illness is in the lungs in small point so I take the cyberknife operation,after then they gave also a high chemo because there are also nodules in the lung.After the last control my ilness was gone for three months. Today I have a small hot spot on my PET scan on my right lung-1cm- and taking chemo in oral way named endoxan(cyclophosfamide).

I want to ask jellbelly 1851 which treatment doctors give to your daughter

and to Julie which drugs given you in your treatment?
I hope to hear more success stories about this illness because for two years I suffer but I didnt recover fully.Thanks to everyone.
Best regards.

Gülsevi

[gulsevi]

Hi- My name is Julie and I have recently been diagnosed with Adult Wilms Tumor.

I woke up with flank pain on June 1st, went the ER. They did a CAT scan and found a 8cm tumor on my right kidney. Within two weeks I had two opinions from urologists and they removed my kidney. When the pathology report came back, they said the margins were clear and thought it was RCC, but they sent the slides over to Johns Hopkins to make sure. JH diagnosed it on Monday as Adults WT.

I have an appointment with JH on the 27th. From what I understand, I will have to have chemo. I don't know the stage of the tumor, but based on what I know it would fall into stage I. And all tests came back negative for spreading.

Does ANYONE know ANYONE that has/had Adult's WT? It is a very rare type of kidney cancer for adults. Children mostly have it.

why didnt anone answer?

[JStrait]

My son is 29 and was diagnosed first with RCC, and now it looks like Wilms. He is scheduled for surgery on Friday. I would love to hear how everyone is doing now. It has been such a comfort to read each of your entries. Today as I re-read them I took time to pray for each of you. Please continue to post to this site as I know I can't be the only one who gets comfort from your strength, and gets strenght from your hard earned knowledge. Thanks

[gulsevi]

Hi Jstrait ,
First I want to say my best regards and thanks for your pray. This period may be a long time or short we cant know but I want to say be determined and never let your son change her mind about the treatment. I am suffering from this illness at about 3 years and I learned to live with it. I am waiting for the control after the chemo and prayin each day. Hope your son will soon get better.
Best wishes...

[shlomittoronto]

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