Diagnosis

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

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.

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:

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.

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.

It's not too late to join us for the next Town Hall event in our series! Learn about shared decision-making and your immunotherapy choices from leading oncologists. 
Register now: https://bit.ly/ImmunotherapyTownHall
#kidneycan #immunotherapy #townhall #livingwithcancer #cancerlife #kidneycancer #patienteducation

It's not too late to join us for the next Town Hall event in our series! Learn about shared decision-making and your immunotherapy choices from leading oncologists.

Register now: https://bit.ly/ImmunotherapyTownHall

#kidneycan #immunotherapy #townhall #livingwithcancer #cancerlife #kidneycancer #patienteducation
...

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It's not too late to register for our next Town Hall event! Learn about immunotherapy choices for #kidneycancer treatment from leading oncologists. We'll have Dr. Naomi Haas from Penn Medicine, Dr. Hans Hammers from UTSW, and Dr. Monty Pal from City of Hope. 
📅 Tues, April 26
🕔 5:00 PM EDT
💻 Free Webinar via Zoom
Register now! https://bit.ly/ImmunotherapyTownHall
#kidneycan #livingwithcancer #cancerlife #patienteducation #empoweredpatient #shareddecisionmaking

It's not too late to register for our next Town Hall event! Learn about immunotherapy choices for #kidneycancer treatment from leading oncologists. We'll have Dr. Naomi Haas from Penn Medicine, Dr. Hans Hammers from UTSW, and Dr. Monty Pal from City of Hope.

📅 Tues, April 26
🕔 5:00 PM EDT
💻 Free Webinar via Zoom

Register now! https://bit.ly/ImmunotherapyTownHall

#kidneycan #livingwithcancer #cancerlife #patienteducation #empoweredpatient #shareddecisionmaking
...

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Reminder! Our next patient education town hall will explore immunotherapy options for #kidneycancer patients. 
📅  April 26th
🕔 5:00 pm ET
💻 via Zoom webinar
Register here: https://bit.ly/ImmunotherapyTownHall
Featuring Drs. Naomi Haas of UPenn, Hans Hammers of UTSW, and Monty Pal of City of Hope. Join us to hear this panel of leading expert oncologists discuss how they share the immunotherapy decision-making process with their patients.

Reminder! Our next patient education town hall will explore immunotherapy options for #kidneycancer patients.

📅 April 26th
🕔 5:00 pm ET
💻 via Zoom webinar

Register here: https://bit.ly/ImmunotherapyTownHall

Featuring Drs. Naomi Haas of UPenn, Hans Hammers of UTSW, and Monty Pal of City of Hope. Join us to hear this panel of leading expert oncologists discuss how they share the immunotherapy decision-making process with their patients.
...

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Researchers! KidneyCAN is accepting abstracts for the 2022 Kidney Cancer Research Summit on October 6-7 in Philadelphia, PA. 
Don't miss the opportunity to be part of this incredible meeting for #kidneycancer specialists. 
Abstract submission guidelines and full details here: http://bit.ly/KCRS22Abstracts
#kidneycancerresearch #cancerresearch #kcsm

Researchers! KidneyCAN is accepting abstracts for the 2022 Kidney Cancer Research Summit on October 6-7 in Philadelphia, PA.

Don't miss the opportunity to be part of this incredible meeting for #kidneycancer specialists.

Abstract submission guidelines and full details here: http://bit.ly/KCRS22Abstracts

#kidneycancerresearch #cancerresearch #kcsm
...

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Another educational opportunity for #KidneyCancer patients! 
Learn from some of the nation's top doctors at Yale Cancer Center. Tomorrow night (Thursday) at 7:00 PM ET. 
Register: https://zoom.us/webinar/register/WN_1uI0atogTR2VKcFC_W78Fg

Another educational opportunity for #KidneyCancer patients!
Learn from some of the nation's top doctors at Yale Cancer Center. Tomorrow night (Thursday) at 7:00 PM ET.

Register: https://zoom.us/webinar/register/WN_1uI0atogTR2VKcFC_W78Fg
...

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Hear the latest in kidney cancer care, emerging therapies and general wellness from Dr. Thomas Hutson DO, Pharm.D., FACP of Texas Oncology and a panel of experts at @curetoday's Educated Patient® Kidney Cancer Summit on Saturday, April 9th . 
Connect with the kidney cancer community and empower your own journey! 
Learn more and reserve your virtual seat: 
http://ow.ly/weVJ50Ivtjy 
#educatedpatient #kidneycancer

Hear the latest in kidney cancer care, emerging therapies and general wellness from Dr. Thomas Hutson DO, Pharm.D., FACP of Texas Oncology and a panel of experts at @curetoday's Educated Patient® Kidney Cancer Summit on Saturday, April 9th .

Connect with the kidney cancer community and empower your own journey!

Learn more and reserve your virtual seat:
http://ow.ly/weVJ50Ivtjy

#educatedpatient #kidneycancer
...

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We continue to honor the caregivers in our community during #KidneyCancerAwareness month. Tracy shares her insightful perspective along with the decisions she and her wife Julie had to make when facing a diagnosis.
Read more:
https://kidneycan.org/tracys-story-a-caregivers-perspective/
#kidneycancer #caregiving #cancerlife #livingwithcancer #caregiving #KCAM

We continue to honor the caregivers in our community during #KidneyCancerAwareness month. Tracy shares her insightful perspective along with the decisions she and her wife Julie had to make when facing a diagnosis.

Read more:
https://kidneycan.org/tracys-story-a-caregivers-perspective/

#kidneycancer #caregiving #cancerlife #livingwithcancer #caregiving #KCAM
...

9 0
Ralph Knapp, your community loves and remembers you. 
Thank you all for your messages of support. 
🧡💚✨

Ralph Knapp, your community loves and remembers you.

Thank you all for your messages of support.

🧡💚✨
...

34 1
With heavy hearts and profound sadness, we announce the passing of Ralph Knapp, a founder of KidneyCAN and leader of our mission to accelerate cures for kidney cancer. 
Ralph was diagnosed in 2014 with stage IV kidney cancer and used the opportunity to increase research funding and bring hope to patients everywhere. Ralph brought a unique energy and entrepreneurial acumen to kidney cancer advocacy, and despite his health challenges, was never without a smile and a hug for everyone. He was a model of faith and optimism, and our team will miss him enormously. 
We are committed to carrying Ralph's mission forward and will share more in the days to come.

With heavy hearts and profound sadness, we announce the passing of Ralph Knapp, a founder of KidneyCAN and leader of our mission to accelerate cures for kidney cancer.

Ralph was diagnosed in 2014 with stage IV kidney cancer and used the opportunity to increase research funding and bring hope to patients everywhere. Ralph brought a unique energy and entrepreneurial acumen to kidney cancer advocacy, and despite his health challenges, was never without a smile and a hug for everyone. He was a model of faith and optimism, and our team will miss him enormously.

We are committed to carrying Ralph's mission forward and will share more in the days to come.
...

42 13

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Remembering Ralph: Time Well Spent

Remembering Ralph: Time Well Spent

Ralph Knapp was diagnosed in 2014 with stage IV kidney cancer and used the opportunity to increase research funding and bring hope to patients everywhere. With heavy hearts and profound sadness, we announce the passing of Ralph Knapp, a founder of KidneyCAN and leader of our mission to accelerate...

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Let’s Get Loud: Spring 2022 Advocacy Days

Let’s Get Loud: Spring 2022 Advocacy Days

On March 7-8, 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...

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IKCC Report: Retention in Clinical Trials

IKCC Report: Retention in Clinical Trials

The International Kidney Cancer Coalition launched a pilot program to understand the barriers and other considerations that drive the decision to leave a clinical trial and uncover ways to better support patients currently in or considering joining clinical trials. Clinical trials are the key to...

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Latest News

Remembering Ralph: Time Well Spent

Remembering Ralph: Time Well Spent

Ralph Knapp was diagnosed in 2014 with stage IV kidney cancer and used the opportunity to increase research funding and bring hope to patients everywhere. With heavy hearts and profound sadness, we announce the passing of Ralph Knapp, a founder of KidneyCAN and leader of our mission to accelerate...