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Child with Clear Cell Sarcoma of the Kidney

CarrieR
Posts: 6
Joined: Sep 2012

My daughter was diagnosed with Stage 2 Clear Cell Sarcoma of the Kidney at 8 months old. She is now 10 months old, has undergone a radical nephrectomy, radiation and is now in chemotherapy for 6 months. Given that this is such a rare form of cancer with poor prognosis, I was wondering if there was anyone out there that has been in this treatment or similar in the past decade?

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

If knowing of other hearts aching for your pain can help, you'll surely get much help here.

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Carrie,

I'm so sorry but can only offer my prayers and the hope that new research and cures find their way to your daughter.

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

is to join ACOR - there are patients, spouses, children with advanced, extensive cancers and many also who are professionals and perhaps could offer suggestions or even another direction to research. I am so sorry about your
daughter! I cannot even imagine how you can cope with this. My prayers are with your daughter and with you - that there is some ray of hope out there!

The link to the ACOR site is below. You will have to copy/paste it into your search engine -this should take you to the signup page.

https://www.acor.org/listservs/join/72

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

That's excellent advice, if you've not found it already. You might also want to look at this page:

https://www.acor.org/pages/resources

and please also join the "Rare Cancers" list run by another of ACOR's great ladies, Mimi Olsson, who will be able to give you priceless help and contacts and is a leading expert on sarcomas in children. You might want to contact her direct and I've sent you her details via the CSN Email facility (in the brown box at the top left of this screen).

Please let me know you've received my private message. If you have any problems finding the places Liz and I are suggesting, let us know here and we'll sort it out.

MicheleDue
Posts: 1
Joined: Oct 2012

Hi Carrie

I saw your post and wanted to reassure you there is hope and a cure. I am transported back to the dark days of diagnosis and really feel for you. My son (about to be 12 on Sunday!) was diagnosed with CCSK at 15 months old - back in 2002. Fortunately he was stage 1, but still had a radical nephrectomy (right kidney)and underwent 7 months chemotherapy. There was also a huge amount of deliberating as to whether to proceed with radiation, which he didn't ultimately undergo.

We are in England, and had fantastic support form our treatment centre (Alder Hey). He has had regular check ups and remains well, and has just started high school.

Terrifying though it is, there is support and ultimately a cure.

I'm rambling a bit but wanted you to know there is life after cancer and honestly a return to a "normal" life.

Take care, love to you and your daughter.

xxxxxxxxxxxxxx

CarrieR
Posts: 6
Joined: Sep 2012

MicheleDue

Thank you so much for taking the time to tell me about your son. There is so little information on CCSK and while the 5-year event-free, survival rates for stage II give us some hope, there is zero information or even people sharing their stories on longer term survival.

My daughter was originally diagnosed with Stage I and we had entered a clinical trial which omitted radiation from the standard protocol. However, upon review by the doctor running the clinical trial, the tumor had grown ever so slightly into the blood vessels which pushed her two Stage II and disqualified her for the clinical trial. We deliberated on radiation and ended up doing it. Ultimately, we'll never know if it was the right thing to do or not.

I'm so happy for your family. I can only hope that I will be able to reach out to someone and give the same hope to them as you've given me.

Thank you.

CarrieR
Posts: 6
Joined: Sep 2012

Thanks to everyone for their thoughts, suggestions and prayers.

foxhd's picture
foxhd
Posts: 1921
Joined: Oct 2011

Carrie, I wish that I could do something of importance to help with your daughters care. Stay strong and see her though this journey. Fox.

gloria.jones's picture
gloria.jones
Posts: 2
Joined: Jan 2013

Hi Carrie,

We are right along with you.  Our child was diagnosed with Stage 3 Clear Cell Sarcoma of the Kidney at 35 months old.  We did the surgery.  We did the radiation.  We are also in chemotherapy.  We are participating in a protocol from the Childrens Oncology Group.  Are you as well?  We have found the neuropathy the most challenging part thus far.  Please let me know how your daughter is doing.  I figure if only 20 children get this a year it would be amazing to know even one parent dealing with the same thing.

Please contact me at gloria.kathleen.jones@gmail.com.

Thank you!

Amilas
Posts: 2
Joined: Feb 2013

Hello Carrie,

My son was diagnosed with Clear Cell Sarcoma back in December of 1999 when he was 16 months old. They removed his left kidey, which had a tumor the size of a grapefruit. It was still in its capsule, so it had not spread. He underwent 6 months of Chemotherapy. He is a healthy boy in his teens now. He does have high blood pressure, but thats because he olny has one kidney doing all the work of 2 and he is overweight. He did have some problems with his legs or feet. He always led with his right foot and kind walks on his tippy toes. But other than that he is fine. His nephrologist has put him on blood pressure medication. But all is well.

Amilas
Posts: 2
Joined: Feb 2013

Hello Carrie,

My son was diagnosed with Clear Cell Sarcoma back in December of 1999 when he was 16 months old. They removed his left kidey, which had a tumor the size of a grapefruit. It was still in its capsule, so it had not spread. He underwent 6 months of Chemotherapy. He is a healthy boy in his teens now. He does have high blood pressure, but thats because he olny has one kidney doing all the work of 2 and he is overweight. He did have some problems with his legs or feet. He always led with his right foot and kind walks on his tippy toes. But other than that he is fine. His nephrologist has put him on blood pressure medication. But all is well.

terrybeck
Posts: 1
Joined: Mar 2013

My son, Andy, was diagnosed with Clear Cell Sarcoma of the kidney in 1999.  He was 20 months old.  His cancer was stage 3.  He had surgery, radiation and chemo.  He tolerated the treatment extremely well and his cancer never returned.   I had a website dedicated to his story on geocities, but the site is gone now.  I have a list of other families affected by CCSK that I can share.  I need to dig it up on my other computer.  It is a rough row, but the prognosis is much better than in the past.  Most of the children on my list are doing fine.

Andy did have a serious complication of his nephrectomy 5 years after completing treatment.  He had adhesions or scar tissue in his belly that ultimately causes his death in 2005 when he was 7.  This is a common complication but uncommon result.  Any person that has abdominal surgery will have abdominal adhesions.  It is not common for those adhesions to be fatal. Andy is the only childhood cancer survivor that I know about that passed from this complication.

I will come back and post the websites of the other children a little later.

 

Terry

CarrieR
Posts: 6
Joined: Sep 2012

I'm happy to report that my daughter completed her treatment in February. We've had two sets of scans since and both are showing no evidence of disease.   Thanks to everyone who took the time to offer hope.   It meant everything to me.   We will continue with scans for several years and hope that nothing ever reemerges or that a secondary cancer does not spring up.  Thank you!

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Carrie,

Wonderful news. Thank you for coming back and sharing it with us. Will be looking for more posts down the road with more of the same!

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Thats what we all love to hear!  Please keep updating us!

foxhd's picture
foxhd
Posts: 1921
Joined: Oct 2011

the resilency of kids! God bless.

foxhd's picture
foxhd
Posts: 1921
Joined: Oct 2011

the resilency of kids! God bless.

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

That is fantastic news! For the first time, in a such a long time you must feel able to breathe. All the best for the future, come back and visit from time to time:-)

Djinnie x

T1ffanyz's picture
T1ffanyz
Posts: 41
Joined: Aug 2013

I'm 31 and enduring this struggle.  I can't imagine a child having to go thru this, my prayers are with you and your little girl.  

lauraortiz
Posts: 1
Joined: Dec 2013

I know it's a year later, but I just saw your message and want to share with you. My son, Dakota is a healthy 17-year-old high school senior. In 1997, he was diagnosed and treated for CCSK.  That was only a few years after new protocol was designed to treat this type of cancer more aggressively. I wish your daughter the best for a long, healthy life.

 

Laura

Rui Filho
Posts: 1
Joined: Jul 2014

My daughter was diagnosed with CCSK in 2011. Received confirmation que Then it was stage 1. Went through chemotherapy treatment for 6 months and did not need radiotherapy. Today, he is free of the disease and is a healthy, smart and very cheerful. I'm sorry if my message was strange because I used a translation tool. My email: rui.reinehr @ gmail.com

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