Building a 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.

Finding a comprehensive cancer center

SPOREs (Specialized Centers of Excellence)

The SPOREs (Specialized Centers of Excellence) in kidney cancer foster collaborations among experts in renal cancer generating new resources and research opportunities for the scientific community.  These centers offer a full team of specialists with expertise in management of kidney cancer. Patients who live a distance from either of these centers often choose a SPORE.

NCI-Designated Cancer Centers

Ideally you will find doctors who specialize in kidney cancer. NCI-Designated Cancer Centers deliver cutting-edge cancer treatments to patients in communities across the United States and are a good choice for your care center if the distance to one is manageable.

Do I need a second opinion?

Kidney Cancer is considered relatively uncommon,  so a second opinion at a major cancer center on your choice of treatment may help you feel more confident about the treatment plan.  A second opinion is especially important to consider if you have a rare subtype of kidney cancer. Visit this cancer.net page for further information.

Here’s a lead oncologist from an NCI cancer center explaining the importance and the process for getting a second opinion:

Doctors who specialize in kidney cancer

Oncologic surgeons and medical oncologists

Your first appointment (also called a consult) will usually be with a urologist trained to treat cancer with surgery. This physician may also be referred to as a urologic oncologist. Many patients will also see a medical oncologist, a physician trained to treat kidney cancer with medications.

Questions for my doctors

Writing questions down before your appointment is a good way to prepare and feel more in control. The list of questions in your lap is a good signal to the doctor to give you time for questions toward the end of your consultation.

This reference from Cancer.net will help you make a list of questions for your visit. It is also a good idea to have someone attend these initial treatment related appointments with you if possible. They can take notes and provide another set of ears, since there will be a lot of information to be understood and processed.

This video from healthination.com has some useful information.

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.

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.

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
...

7 0
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
...

7 0
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.
...

7 0
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
...

6 0
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
...

8 0
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
...

11 0
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

WHO WE ARE →

WHAT WE DO →

OUR STORIES →

THE KIDNEY CANCER COMMUNITY →

SCIENTIFIC ADVISORS →

DONATE →

CONTACT →

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...

SPRING ADVOCACY DAYS 2022 →

JOIN OUR COMMUNITY →

RAISING AWARENESS →

BE AN ADVOCATE →

DONATE NOW →

CONTACT →

Latest News

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...

Patient Resource Center

UNDERSTANDING YOUR KIDNEY CANCER DIAGNOSIS

BUILDING A CARE TEAM

TREATMENT & TRIAL OPTIONS

LIVING WELL WITH KIDNEY CANCER

KCRS: KIDNEY CANCER RESEARCH SUMMIT →

RESEARCH OPPORTUNITIES →

NEWS →

Latest News

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...

SUPPORT OUR WORK →

FUNDRAISE FOR KIDNEYCAN →

DONATE →

CONTACT →

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...