Wilms’ tumor (also called nephroblastoma) is the most common kind of kidney cancer found in children. Even so, it is a rare cancer that’s usually found in kids under about age five. It can also occur in adults, but that’s even more rare.
If your child’s doctor has just told you your child has this cancer, you’re probably feeling scared and overwhelmed. You no doubt want all the information you can find about this tumor and how to help your child fight it.
The internet is a great place to find this information. But you do need to be careful. If you’re not, you could fall down the rabbit hole, following link after link and getting completely overwhelmed.
Because this is such a stressful time, it’s a good idea to start slow (yes, slow) and get a basic understanding before digging deeper. That’s what we’re here to help you with.
We link to a few good sources in a few categories that can get you started without drowning you in information. Once you have this basic knowledge, you’ll have a better idea of what to ask your doctor and what else to search for online. You’ll be able to be more focused as you keep learning.
When you are ready to do your owner deeper search, we have a page of tips to help you find and identify good, reliable sources.
Wilms’ Tumor Overviews
Overviews are a good way to get a basic understanding of a disease, starting with symptoms and all the way through diagnosis, treatment and beyond.
Wilms tumor: A very basic overview from MedlinePlus. It includes a few pictures and many links to more information about tests and treatments.
Wilms tumor on KidsHealth: This site is dedicated specifically to kids’ health. The section for parents includes easy-to-understand and comforting information to help parents understand their child’s disease and feel more confident in dealing with it.
Wilms’ Tumor guide from Mayo Clinic: This overview includes ideas for questions to ask your child’s doctor and tips for helping your child (and whole family) cope with treatments.
Wilms Tumor detailed guide: This guide is from the American Cancer Society. It is organized as a series of questions (like a FAQ section) about causes, diagnosis, treatment, talking with your doctor and more.
Kidney Cancer in Children (Wilms Tumor): This overview from CureSearch for Children’s Cancer is broken into three sections: Just Diagnosed, In Treatment and After Treatment. These sections are also divided into smaller sections. At this point you’re probably most interested in the first two sections. It might seem too early to think about after treatment, but it can actually be helpful to know where you’re heading and what kinds of issues your child might face even after treatment is finished.
Research into Wilms’ Tumor
There are researchers working hard to understand childhood cancers of all kinds, including Wilms’ tumor. Many of these studies need patients to participate. Of course, a trial is not right for everyone, but if you and your doctor feel it is a good choice in your case, it could help not only your child but other children who can then get better treatment.
Children’s Oncology Group (COG): This clinical trials group focuses specifically on childhood and adolescent cancers. It has member institutions across the country and runs a variety of trials into understanding, treating and surviving these cancers.
If you’re working with doctors at a COG institution, they can help you find COG-sponsored trials your child may qualify for. You can also limit searches at the below sites to only COG-sponsored trials. But it’s probably a good idea to start with a wider search. Other trials could be more appropriate for your case.
NCI Clinical Trials Search: This is the list of studies on Wilms tumor in the NCI database. If you click “refine search” you can narrow it down by location, drug and other criteria. If you choose Children’s Oncology Group under the Lead Organization section, you’ll find only trials being run by COG.
Wilms tumor trials on ClinicalTrials.gov: We link to results for a search of Wilms tumor and limited to only open studies that either are or will soon be recruiting. For studies sponsored by COG, click here.
CenterWatch clinical trials list: This site lists trials by state. You can also narrow the results further by location, age, gender and trial phase.
There’s a lot of overlap between these sites, but sometimes a study will be listed in only one. Also, you may find one easier to use than the other. So we list them all for you.
Forums and Support Groups about Wilms’ Tumor
You and your child need support during this stressful time. Family and friends can help, of course. But often only other parents and kids with Wilms or other cancers can really understand how you’re feeling.
In-person and online communities and support groups can help you feel less alone.
Children with Wilms’ Tumor: This is an email listserve group from the Association of Cancer Online Resources. Parents and caregivers of children with this tumor as well as adults with Wilms are welcome. According to ACOR the group had 282 members when we visited. But it’s hard to know how active it is, since only registered members can get posts.
To see if there are any local groups near you, try searching Wilms’ tumor and your city in Google.
For support from people dealing with cancer, but not necessarily Wilms’, we have resources listed on a few pages. Our Children’s Resources page offers help for parents to talk with their kids about cancer as well as resources aimed directly at kids to help them cope. Some of the resources deal more with children dealing with a parent’s cancer, but others help them cope with their own.
Our Caregivers resources page may also be helpful to you as you learn to cope with having a child with cancer.