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Pls help!!! is there good benefits if I sign away my baby's Wilm's Tumor??? can research hurt my baby??

her name is RIO's picture
her name is RIO
Posts: 8
Joined: Jan 2011

Hello everyone!! we just got home about 2 days ago after having surgeons remove my baby's left kidney do to a growing tumor which is called a Wilm's Tumor. We are getting ready for tuesday for her first appointment with Oncologists. Yet I have a concern. We have some paper work that they would like us to fill out called study title: AREN03B2, Renal Tumors Classificatiton,Biology and Banking Study. I understand that they can research more about the tumor and the links of genes. It seems as if my baby could benefit if we signed her tumor away for more research. I know they can come up with a better treatment options for her. Yet I also understand that they can always come back and tell Physician that they feel that a different treatment would be more beneficial for her than standard treatment. But what if she is injured or maybe they want to see how this subject reacts with some new modern cure that they have came up with. Pls....I'm very confused and need guidance. not sure if I should turn in these papers in on tuesday or research some more. Parents out there if you have experienced dealing with a similar story like mine pls do reply. diagnose wilm's tumor, removal of left kidney do to growing tumor, 3year old baby and favorable histolagy stage 1 with Lymphnodes clear. I need any advice I can get please help. how many of you out there have signed up for this research?? Ty....and I look forward to reading similar stories. also what should I expect during our monitoring visits once a week with Oncologists???

icemantoo's picture
Posts: 3353
Joined: Jan 2010

Donating your child's tumor for research is a very personal decision which could help other children down the road with a similar diagnosis.

Von55's picture
Posts: 57
Joined: Aug 2010

Yes, this is a very personal decision which you need to discuss thoroughly with your medical advisors. The dilemma seems to be two-fold- allowing them to research the tumour (which can in no way harm your baby- it's already been removed) and then the possible consequences of treatment based on the info gained from the research. This is a different matter, but I'm very sure that no new treatment can be performed without your permission anyway, which gives you heaps of time to investigate your options should a new method of treatment become available.
I really feel for you and can only imagine your anxiety with all you've been through with your girl. Please try though to calm down & not put the next cart before the horse! There are others on the boards discussing childhood cancer and I hope they can reassure you and point you in the right direction to get the information you need.
All the best to you

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