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Kidney cancer is one of the more common cancers in the US. In fact, in recent years the number of people diagnosed seems to be going up. It’s not clear if that’s because more people are getting it or because increased use of imaging tests means it’s being found more often (sometimes accidentally, when doctors are looking for something else).
Whatever the reason, if you’ve just been diagnosed, you’re probably in search of more information about it and how you can beat it. That’s what we’re here for.
This page lists some high-quality resources to get you started. The specific focus of this page is Renal Cell Carcinoma (which also has several subtypes). If that’s not what you’re looking for, we have pages for the other kinds of kidney cancer, too (some of the information will overlap):
- Renal Pelvis Carcinoma
- Wilms Tumor (usually a childhood cancer)
The resources we list here are not the only ones available, but they’re some of the best and easiest to understand that we found. And at this point we understand that you’re most likely looking for simple. Anything too complicated might be too overwhelming right now.
So explore these resources, learn what you need, find support from others who are on the same journey and hopefully start to feel more in control again.
Of course, you’ll still need to talk with your doctor so you can come up with a treatment plan together. But now you’ll be better equipped to understand what your doctor’s saying and ask the right questions before making any decisions.
If you feel that you need more information after reading these resources, that’s the time to do more research on your own. Some of these resources link out to other helpful sites or recommend further reading. If you want to do a Google (or other search engine!) search, we offer some tips for recognizing reliable resources.
Renal Cell Cancer Overviews
We like to start with overviews, because they get you started on understanding the whole course of disease, from symptoms to diagnosis, treatment and beyond. Most of these overviews are for kidney cancer in general. They are mostly about renal cell cancer but may touch on renal pelvis cancer. The others focus specifically on renal cell carcinoma.
Renal cell carcinoma: This basic overview from MedlinePlus includes an illustration of a normal kidney, a picture of a tumor on a CT scan and more. It also links to more info on some of the symptoms and tests mentioned.
Kidney Cancer (Adult) Overview: This guide is from the American Cancer Society. There’s also a detailed guide with more in-depth information. Depending on how much you already know, you may want to start with the overview guide and then fill in the details with the detailed guide.
What You Need To Know About™ Kidney Cancer: This National Cancer Institute publication explains how the kidneys work (it includes pictures), diagnosis, treatment and more. There are also sections on getting a second opinion and follow-up care.
Information About Renal Cell Cancer: This overview, also from NCI, is similar to the What You Need to Know overview, but the information is presented slightly differently. Also, there are different links to more information in each. You may prefer the way one is written more than the other.
Kidney Cancer: This Mayo Clinic overview includes ideas for questions you may want to ask your doctor and advice for coping.
Organizations Devoted to Kidney Cancer
There are a number of organizations that work to increase awareness of and research into kidney cancer. They also provide information and support to patients and their loved ones. We link to the organization’s home page and, in some cases, directly to some of the patient-specific resources they offer (some of those links may be in other sections of this page).
Kidney Cancer Association (KCA): This is an international charity working to increase survival and decrease suffering from this disease. It helps fund research and supports patients. Its About Kidney Cancer page describes the various subtypes of RCC (something many other overviews do not or only touch on briefly). Knowing the type you have can help you make better treatment choices.
Kidney Cancer UK: This is a UK-based group formed by two kidney cancer patients in 2000. It works to raise awareness of kidney cancer, support patients and provide information to both patients and healthcare professionals. Their FAQ page can answer many questions you might have. And their Kidney Cancer Fact Pack offers even more information and additional resources (you do need to register to download it). There’s also a forum, but it doesn’t appear to be very active (the most recent post was several months old when we visited). But all threads are open for the public to read, and you might find something relevant to your situation.
Research/Clinical Trials on Renal Cell Cancer
Researchers are evaluating treatments of many different drugs at various stages of kidney cancer. Depending on your situation, you might like to be a part of one of these trials. Your doctor can help you decide if this is the right option for you and which trial is best for you.
These sites are a good place to start finding out what kinds of trials are currently accepting patients. There’s probably a lot of overlap in studies listed, but each database also has studies not found in the others. If you’re serious about finding a trial, it may be a good idea to look into each one.
Kidney Cancer studies on ClinicalTrials.gov: This searchable database has information on government- and industry-funded studies submitted to it by the researchers or sponsors behind the trials. We link to the results for kidney cancer, modified to include only open studies. You can also modify it further by limiting it to studies near you, specific age groups and more. A search specifically for renal cell carcinoma brings up a shorter list, which you can also narrow even more if you want to.
CenterWatch Kidney Cancer Clinical Trials listing: CenterWatch has listings for renal cell cancers under three headings:
There is a lot of overlap between the three lists, but where a specific trial gets listed appears to depend on how the researchers described it. So some may be listed in only one spot. If you don’t see any relevant to your case, you can also sign up to get email alerts when new trials are added—the link’s on the right side of the page.
NCI Clinical Trials database: This database includes open and closed studies sponsored by NCI as well as other organizations and companies. The form asks for a lot of information upfront, but you can skip any you are not sure of. If you need help, the site has a guide on how to use the form, as well as options to call or get online help with LiveHelp chat. These options are at the upper left of the page.
Forums and Support Groups about Kidney Cancer
Sometimes you might feel very alone as you struggle with treatment and tests and wondering when/if it’s all going to be ok again. Family and friends can be a source of comfort, but unless they’ve been through it, they may not really understand.
That’s when support from people who are or have been right where you are can help. These are some resources where you can find them.
Renal Cell Carcinoma Support Group on DailyStrength: This group appears moderately active. Anyone can browse the threads, but you need to register to post.
Kidney Cancer Support Network: This site describes itself as “The independent forum run by KC patients for KC patients.” It also appears moderately active and had activity within the past few days when we visited. Again, it’s open to anyone to read but posting requires registration. UK users can find other UK users on a map and send a message through the site.
In addition to these groups specific to kidney cancer, there’s a lot of support available for people with any cancer diagnosis. We list those on our Cancer Patient Resources page.
Other Resources for Renal Cell Cancer
You might also find these sites helpful, depending on your situation.
Nurse Hotline from KCA: Call and talk with an oncology nurse who can answer your questions about treatments, side effects and more. Need a doctor? They can also give you a referral.
Create a Fundraiser: KCA has partnered with GiveForward to help cancer patients and their families (in the US) raise funds to pay their medical expenses. They have a similar partnership with GoGetFunding, which works with people in other countries too.
Info Sheets for Kidney Cancer Drugs & Side Effects: These fact sheets are from KCA and can help you understand more about the drugs, how you’ll be taking them and possible side effects. This way you can be prepared. It can also be helpful to discuss this information with your doctor before making a final treatment choice.
Information for Kids About Kidney Cancer
If you have children, you may be worried about telling them you have cancer. This is normal, and there’s a lot of information on how to have that conversation.
There’s also a lot of resources specifically designed to help children cope with a parent’s cancer (or their own).
We didn’t find any good ones specific to kidney cancer, but we have gathered a list of resources to help kids understand and cope with cancer. Some are for parents and others are specifically for your children.
Kidney Cancer Caregiver Resources
Caring for someone with kidney cancer can be stressful, too. It’s not selfish to seek out support for yourself. You need to take care of yourself in order to keep being a good caregiver.
We didn’t find any good resources specific to kidney cancer, but we do have a list of resources available to people caring for someone with any kind of cancer.
Keep in mind that we focus on national groups and organizations as well as online support. It’s possible there’s a local support group you can join. To find out, try searching for “kidney cancer caregiver support” (without the quotes) plus your city.