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.

Day 2 of #KCRS24 was a whirlwind of groundbreaking research, insightful discussions, and inspiring moments! Together, we’re #AcceleratingCures for #KidneyCancer. Thank you all for an amazing conference!

Day 2 of #KCRS24 was a whirlwind of groundbreaking research, insightful discussions, and inspiring moments! Together, we’re #AcceleratingCures for #KidneyCancer. Thank you all for an amazing conference! ...

11 0
We don't join the #kidneycancer community voluntarily, but once we do, we meet the most inspiring people. Today we want you to take a moment to honor the powerful legacy of Jeffrey David Sterne. 💚🧡✨

Walk for Jeff is a special 5K event dedicated to raising funds for kidney cancer research. To honor Jeff's wishes, the Sterne family has raised almost $20,000. Read our blog to learn more about his story and how you can support the cause:

Read the blog: https://bit.ly/WalkForJeff
Donate: https://bit.ly/GiveForJeff

We need cures now. 💔

#WalkForJeff #KidneyCancerResearch #WeRememberJeff #AcceleratingCures

We don`t join the #kidneycancer community voluntarily, but once we do, we meet the most inspiring people. Today we want you to take a moment to honor the powerful legacy of Jeffrey David Sterne. 💚🧡✨

Walk for Jeff is a special 5K event dedicated to raising funds for kidney cancer research. To honor Jeff`s wishes, the Sterne family has raised almost $20,000. Read our blog to learn more about his story and how you can support the cause:

Read the blog: https://bit.ly/WalkForJeff
Donate: https://bit.ly/GiveForJeff

We need cures now. 💔

#WalkForJeff #KidneyCancerResearch #WeRememberJeff #AcceleratingCures
...

10 0
Day 1 of #KCRS24 was a huge success! 🎉 From groundbreaking presentations to engaging discussions, we kicked off the summit with a bang. Stay tuned for more on Day 2! #AcceleratingCures

Day 1 of #KCRS24 was a huge success! 🎉 From groundbreaking presentations to engaging discussions, we kicked off the summit with a bang. Stay tuned for more on Day 2! #AcceleratingCures ...

8 0
🔦 Session Spotlight: "Immunotherapy Advances and Research" at #KCRS24! Explore the latest approaches and trials in immunotherapy. Find out what's new and promising in the fight against #kidneycancer!

Don't miss out—register for the virtual conference or check out the livestream on YouTube!
🔗 bit.ly/KCRS24Register

#AcceleratingCures

🔦 Session Spotlight: "Immunotherapy Advances and Research" at #KCRS24! Explore the latest approaches and trials in immunotherapy. Find out what`s new and promising in the fight against #kidneycancer!

Don`t miss out—register for the virtual conference or check out the livestream on YouTube!
🔗 bit.ly/KCRS24Register

#AcceleratingCures
...

6 0
Welcome to #KCRS24! 🎉 The stage is set, people are arriving, and the show is just getting started. Get ready for two days packed with cutting edge research and inspiring discussions in #kidneycancer. Let’s accelerate cures together!

Welcome to #KCRS24! 🎉 The stage is set, people are arriving, and the show is just getting started. Get ready for two days packed with cutting edge research and inspiring discussions in #kidneycancer. Let’s accelerate cures together! ...

18 1
🔦 Session Spotlight: "Clinical and Scientific Updates in Kidney Cancer" at #KCRS24! Get the latest patient treatment updates from top experts in this 90-minute session. Essential info on clinically available advancements!

Don't miss out—register for the virtual conference or check out the livestream on YouTube!
🔗 bit.ly/KCRS24Register

#KidneyCancer #AcceleratingCures

🔦 Session Spotlight: "Clinical and Scientific Updates in Kidney Cancer" at #KCRS24! Get the latest patient treatment updates from top experts in this 90-minute session. Essential info on clinically available advancements!

Don`t miss out—register for the virtual conference or check out the livestream on YouTube!
🔗 bit.ly/KCRS24Register

#KidneyCancer #AcceleratingCures
...

3 0
Don’t miss the chance to hear from top researchers TOMORROW at #KCRS24. Register FREE for virtual access!

🔗 bit.ly/KCRS24Register

#CancerResearch #AcceleratingCures

Don’t miss the chance to hear from top researchers TOMORROW at #KCRS24. Register FREE for virtual access!

🔗 bit.ly/KCRS24Register

#CancerResearch #AcceleratingCures
...

6 0