Patient Resource Center

A diagnosis of kidney cancer can be quite overwhelming at first.  There is an infinite amount of information available to patients and caregivers who are reeling from the diagnosis.

We’ve put together a list of common questions we often get from patients, as well as links to relevant information for those just starting to form a plan for a newly-diagnosed renal mass.

Our goal is to inform without adding to the overwhelm you’re already experiencing. We have reliable resources of information to help you as you begin to learn about kidney cancer.

A Kidney Cancer Diagnosis

What is a renal mass?

“We see a mass on your kidney.”  Perhaps you heard this statement after a CT or ultrasound that was performed for another reason, and you are wondering what is going to happen next. Kidney cancer is also referred to as a “renal mass” which is an abnormal growth in the kidney.

Why didn’t my doctor find my kidney cancer sooner?

There is no screening test for kidney cancer so it is usually discovered by chance or after symptoms develop. Genetic health conditions can increase a risk for kidney cancer. Additional testing is usually required to make a good plan for your care.

There are so many medical words that I don’t understand!

You’ll soon become very familiar with the terminology and acronyms used in your care. In the meantime, here’s a tool to help.  Enter the word you’d like explained in this dictionary of cancer terms provided by the National Cancer Institute:

VISIT >

Useful Videos

This excellent video “When the Doctor Says Cancer” from CANCER.NET gives you an excellent overview of how to navigate this difficult time.
This video from the Urology Care Foundation “What is a Renal Mass?” is a good place to start understanding about kidney cancer.

Click the image to download this comprehensive resource book from the National Comprehensive Cancer Network for clear and comprehensive information about many aspects of kidney cancer, from basic concept to treatment guides.

Listen as Dr. Hans Hammers of UT Southwestern talks about diagnosis, early doctor visits, second opinions, shared decision making, and the early planning process.

Building your care team

Choosing a doctor can feel overwhelming, but this is especially true for patients with kidney cancer, which is considered one of the more “rare” cancers.

How is kidney cancer treated?

Your treatment will be customized to your own disease and you may not have a plan until test results are available.  You may be given more than one option for treatment.

In this case, resources created by the International Kidney Cancer Coalition called “My Treatment, My Choices”  might be very helpful. These informational PDFs include workbooks to help you understand your options, ask the right questions at your appointments, and make a care plan.

Surgery, targeted therapy,  immunotherapy, or a combination may be used, depending on how advanced your cancer is.

Traditional “chemotherapy” isn’t used for most types of kidney cancer.

Should I join a clinical trial?

The word “trial” can be a little intimidating. Most of us would prefer known treatments, certain outcomes. Unfortunately, for many cancer patients, trials are their best hope. Trials are also how we make progress toward cures. Talk to your doctor about whether a clinical trial could be right for you. 

Connect with Our Communities

There are multiple support groups serving the kidney cancer community.  SmartPatients.com is a patient forum and a KidneyCAN partner. We recommend this as a private, moderated  place to talk with other patients.  Your cancer center may also have their own support groups.

Reliable  Resources for Cancer Information
The internet is vast, and looking online for medical information or resources can be overwhelming. Here are some trustworthy sites to find information on kidney cancer.
NATIONAL CANCER INSTITUTE
www.cancer.gov
From the American Society of Clinical Oncologists (ASCO)
CANCER.NET
www.cancer.net
NATIONAL COMPREHENSIVE CANCER NETWORK
Guidelines for Patients with Kidney Cancer
www.nccn.org
NATIONAL COMPREHENSIVE CANCER NETWORK
Pautas para Pacientes con Cáncer de Riñón (Español)
www.nccn.org
INTERNATIONAL KIDNEY CANCER COALITION
www.ikcc.org
CANCER AND CAREERS
Strategies for Coping with Cancer in the Workplace
www.cancerandcareers.org

This helpful widget from the National Cancer Institute can help you with medical vocabulary:

Join Our Grassroots Army

We know that awareness of kidney cancer and its impact on many lives leads to a sense of urgency, a desire for solutions. Awareness leads to advocacy, and advocacy — joining to speak as one voice — leads to funding and research. That’s how we get to cures.

Plan to join us next week on Tuesday for one of our most popular events!
Dr. Rana McKay of UC San Diego and Dr. Hans Hammers of UTSW will discuss the latest research in #kidneycancer -- both what we learned in 2022 and what we can look ahead to in 2023. Register in advance to submit your questions to the panel. 
⭐ Looking Back, Looking Forward: The Latest News in Kidney Cancer Research
📆 Tuesday, January 31st
🕧 6:00-7:00 pm ET
💻 FREE Zoom webinar
✏️ Sign up at kidneycan.org
Following the Town Hall, we will have an informal Zoom social for patients and caregivers to connect. 
Don't miss this! We can't wait to see you!

Plan to join us next week on Tuesday for one of our most popular events!

Dr. Rana McKay of UC San Diego and Dr. Hans Hammers of UTSW will discuss the latest research in #kidneycancer -- both what we learned in 2022 and what we can look ahead to in 2023. Register in advance to submit your questions to the panel.

⭐ Looking Back, Looking Forward: The Latest News in Kidney Cancer Research
📆 Tuesday, January 31st
🕧 6:00-7:00 pm ET
💻 FREE Zoom webinar
✏️ Sign up at kidneycan.org

Following the Town Hall, we will have an informal Zoom social for patients and caregivers to connect.

Don't miss this! We can't wait to see you!
...

9 1
This is one of our most-anticipated annual events, and we've got a rockstar lineup for the 2023 edition!
▶️ Looking Back, Looking Forward: The Latest Research in Kidney Cancer
▶️ Tuesday, January 31st
▶️ 6:00 pm ET
▶️ Free Zoom Webinar
Dr. Rana McKay of UC San Diego Health will review the 2022 #kidneycancer research breakthroughs, and Dr. Hans Hammers of UTSW will discuss what we can anticipate in 2023. 
Don't miss out! Ask your questions when you register, and our panel will include what we can in the program!
Register now at https://kidneycan.org/2023-kidney-cancer-research-town-hall/

This is one of our most-anticipated annual events, and we've got a rockstar lineup for the 2023 edition!

▶️ Looking Back, Looking Forward: The Latest Research in Kidney Cancer
▶️ Tuesday, January 31st
▶️ 6:00 pm ET
▶️ Free Zoom Webinar

Dr. Rana McKay of UC San Diego Health will review the 2022 #kidneycancer research breakthroughs, and Dr. Hans Hammers of UTSW will discuss what we can anticipate in 2023.

Don't miss out! Ask your questions when you register, and our panel will include what we can in the program!

Register now at https://kidneycan.org/2023-kidney-cancer-research-town-hall/
...

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Our partner @jnkcf is hosting #KidneyCancer conversations, and the next one up features one of our favorite teammates! Meryl is speaking about navigating life with kidney cancer. 
This event is free! 
Register at https://jnfkidneycancer.org/navigating-life-with-kidney-cancer-a-survivors-testimony-with-meryl-uranga/

Our partner @jnkcf is hosting #KidneyCancer conversations, and the next one up features one of our favorite teammates! Meryl is speaking about navigating life with kidney cancer.

This event is free!

Register at https://jnfkidneycancer.org/navigating-life-with-kidney-cancer-a-survivors-testimony-with-meryl-uranga/
...

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Today we honor the life and legacy of Dr. Martin Luther King, who said in 1966: "Of all the forms of inequality, injustice in health is the most shocking and the most inhuman because it often results in physical death." He was speaking at the Medical Committee for Human Rights annual meeting in Chicago.
The mission of KidneyCAN is to accelerate cures for kidney cancer. We believe that means accelerating cures for everyone through a commitment to practices that promote equity, diversity, and inclusion. Here's to continued antiracist work that addresses systemic inequities in health care, including access to clinical trials.

Today we honor the life and legacy of Dr. Martin Luther King, who said in 1966: "Of all the forms of inequality, injustice in health is the most shocking and the most inhuman because it often results in physical death." He was speaking at the Medical Committee for Human Rights annual meeting in Chicago.

The mission of KidneyCAN is to accelerate cures for kidney cancer. We believe that means accelerating cures for everyone through a commitment to practices that promote equity, diversity, and inclusion. Here's to continued antiracist work that addresses systemic inequities in health care, including access to clinical trials.
...

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Do you know how to keep your kidneys healthy during #kidneycancer treatments? What about after treatments? 
Join us for a special Live stream event where we’ll answer your questions on protecting kidney health, streaming tomorrow at 2 pm ET on Facebook, YouTube, & Twitter! 
RSVP now to get notifications on FB: https://fb.me/e/3Rig4xARG

Do you know how to keep your kidneys healthy during #kidneycancer treatments? What about after treatments?

Join us for a special Live stream event where we’ll answer your questions on protecting kidney health, streaming tomorrow at 2 pm ET on Facebook, YouTube, & Twitter!

RSVP now to get notifications on FB: https://fb.me/e/3Rig4xARG
...

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Congress is poised to approve $50 million dollars for #kidneycancer research in 2023! 
This year, we attended 390 Capitol Hill meetings with over 300 advocates working the Hill. We are grateful to you, our grassroots supporters, for helping to make this happen.

Congress is poised to approve $50 million dollars for #kidneycancer research in 2023!

This year, we attended 390 Capitol Hill meetings with over 300 advocates working the Hill. We are grateful to you, our grassroots supporters, for helping to make this happen.
...

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The holiday season can be busy and stressful, even when you're feeling great! When you're juggling hosting and shopping and traveling while ALSO living with #kidneycancer, it can be too much. 
We gathered some experts to share tips for coping and caring for yourself during the holidays! 
WATCH: https://youtu.be/l4miZPznhQQ

The holiday season can be busy and stressful, even when you're feeling great! When you're juggling hosting and shopping and traveling while ALSO living with #kidneycancer, it can be too much.

We gathered some experts to share tips for coping and caring for yourself during the holidays!

WATCH: https://youtu.be/l4miZPznhQQ
...

6 1
When you're living with #kidneycancer, the holidays sometimes have to take on a "new normal," with adjusted expectations, and that's okay. 
If you're overwhelmed or struggling to feel festive, check out the Town Hall webinar we hosted to help folks handle the holiday season!
WATCH: https://youtu.be/l4miZPznhQQ
#livingwithcancer #cancercare #selfcare #holidayselfcare #rcc #kidneycan

When you're living with #kidneycancer, the holidays sometimes have to take on a "new normal," with adjusted expectations, and that's okay.

If you're overwhelmed or struggling to feel festive, check out the Town Hall webinar we hosted to help folks handle the holiday season!

WATCH: https://youtu.be/l4miZPznhQQ

#livingwithcancer #cancercare #selfcare #holidayselfcare #rcc #kidneycan
...

8 3
Season of Inspiration! We asked our community to share what inspires them on hard days. 
Bill says, "Knowing that kidney cancer can return at any time reminds me that part of each day must be spent doing something joyful. In the many years since diagnosis, I’ve found that supporting animal adoption brings happiness to many people."
Love this! Do something JOYFUL every day. 
What makes you feel #inspired this season? Please share your story with us at info@kidneycan.org to be featured on our pages!

Season of Inspiration! We asked our community to share what inspires them on hard days.

Bill says, "Knowing that kidney cancer can return at any time reminds me that part of each day must be spent doing something joyful. In the many years since diagnosis, I’ve found that supporting animal adoption brings happiness to many people."

Love this! Do something JOYFUL every day.

What makes you feel #inspired this season? Please share your story with us at [email protected] to be featured on our pages!
...

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WHO WE ARE →

WHAT WE DO →

OUR STORIES →

THE KIDNEY CANCER COMMUNITY →

SCIENTIFIC ADVISORS →

DONATE →

CONTACT →

Latest News

Lenny and Phyllis: “We Need to Keep Up the Fight”

Lenny and Phyllis: “We Need to Keep Up the Fight”

Phyllis was diagnosed with kidney cancer in 2012. Tumors were found on both kidneys and treated with surgery. Her cancer progessed to stage IV in 2014, but Phyllis says, "Here I am, ten years later! Life has changed, but it is good!" For this month's Community Spotlight, we are sharing the story...

SPRING ADVOCACY DAYS 2023 →

DISTRICT DAYS 2022 →

JOIN OUR COMMUNITY →

RAISING AWARENESS →

BE AN ADVOCATE →

DONATE NOW →

CONTACT →

Latest News

District Days: Asking Congress to Fund Kidney Cancer Research

District Days: Asking Congress to Fund Kidney Cancer Research

On August 8-9th, KidneyCAN gathered advocates from all over the United States to ask Congress for robust funding for kidney cancer research through the NIH and CDMRP (Congressionally Directed Medical Research Programs). Read on to hear about our goals for this event and how you can help fund...

Patient Resource Center

UNDERSTANDING YOUR KIDNEY CANCER DIAGNOSIS

BUILDING YOUR CARE TEAM

TREATMENT & TRIAL OPTIONS

LIVING WELL WITH KIDNEY CANCER

CLINICAL TRIALS →

IMMUNOTHERAPY →

KCRS: KIDNEY CANCER RESEARCH SUMMIT →

RESEARCH OPPORTUNITIES →

NEWS →

Latest News

The 2022 Kidney Cancer Research Summit

The 2022 Kidney Cancer Research Summit

Dr. Laurence Albiges (Institut Gustave Roussy) presents on the microbiome at KCRS22. The microbiome has now been recognized as one of the emerging hallmarks and enabling characteristics of cancer. KidneyCAN hosted the 4th Annual Kidney Cancer Research Summit on October 6-7, 2022  live in...

SUPPORT OUR WORK →

FUNDRAISE FOR KIDNEYCAN →

DONATE →

CONTACT →

Latest News

Lenny and Phyllis: “We Need to Keep Up the Fight”

Lenny and Phyllis: “We Need to Keep Up the Fight”

Phyllis was diagnosed with kidney cancer in 2012. Tumors were found on both kidneys and treated with surgery. Her cancer progessed to stage IV in 2014, but Phyllis says, "Here I am, ten years later! Life has changed, but it is good!" For this month's Community Spotlight, we are sharing the story...