Patient Resource Center
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:
Useful Videos
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?
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.
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
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
Join Us!
🌍 #WorldKidneyCancerDay is coming up!
IKCC is hosting a Global Patient and Caregiver Symposium on June 15th to discuss living well with #kidneycancer. We`re excited to join and learn together.
Don`t miss out! Register here: https://www.worldkidneycancerday.org/register/
Being diagnosed with and treated for kidney cancer will change many facets of your life. KidneyCAN provides information and support to help you manage your stress and improve your health and well-being at our Patient Resource Center: https://bit.ly/LivingWellRCC
#AcceleratingCures #LivingWellwithCancer
Jun 8
🌍 #WorldKidneyCancerDay is coming up!
IKCC is hosting a Global Patient and Caregiver Symposium on June 15th to discuss living well with #kidneycancer. We`re excited to join and learn together.
Don`t miss out! Register here: https://www.worldkidneycancerday.org/register/
Being diagnosed with and treated for kidney cancer will change many facets of your life. KidneyCAN provides information and support to help you manage your stress and improve your health and well-being at our Patient Resource Center: https://bit.ly/LivingWellRCC
#AcceleratingCures #LivingWellwithCancer
📣 World Kidney Cancer Day is on June 15th!
This year`s theme is "Living Well with Kidney Cancer." Join our partners and us at IKCC for the Global Patient and Caregiver Symposium to learn more about maintaining your quality of life while managing #kidneycancer.
Register here: https://www.worldkidneycancerday.org/register/
In the meantime, check out our Patient Resource Center for more resources to help you feel your best while coping with kidney cancer: https://bit.ly/LivingWellRCC
#WorldKidneyCancerDay #AcceleratingCures #LivingWellwithCancer
Jun 7
📣 World Kidney Cancer Day is on June 15th!
This year`s theme is "Living Well with Kidney Cancer." Join our partners and us at IKCC for the Global Patient and Caregiver Symposium to learn more about maintaining your quality of life while managing #kidneycancer.
Register here: https://www.worldkidneycancerday.org/register/
In the meantime, check out our Patient Resource Center for more resources to help you feel your best while coping with kidney cancer: https://bit.ly/LivingWellRCC
#WorldKidneyCancerDay #AcceleratingCures #LivingWellwithCancer
Don`t miss this insightful video featuring Dr. Eric Jonasch from MD Anderson Cancer Center discussing brain metastases in #kidneycancer. Learn about:
· early indicators
· the importance of brain MRIs
· treatment options like SRS and surgery
· the effectiveness of existing drug treatments
Stay informed and empowered on this critical topic. Watch the full video on YouTube: https://youtu.be/q7c-YV85oso
May 31
Don`t miss this insightful video featuring Dr. Eric Jonasch from MD Anderson Cancer Center discussing brain metastases in #kidneycancer. Learn about:
· early indicators
· the importance of brain MRIs
· treatment options like SRS and surgery
· the effectiveness of existing drug treatments
Stay informed and empowered on this critical topic. Watch the full video on YouTube: https://youtu.be/q7c-YV85oso
🇺🇸 Honoring Heroes on Memorial Day 🇺🇸
Today, on #MemorialDay, we remember and honor the brave men and women who made the ultimate sacrifice while serving our country. We pay tribute to their courage, dedication, and selflessness in defending our freedoms.
As we commemorate this day, it is essential to recognize that many service-related deaths result from diseases, specifically #kidneycancer, linked to exposures during military service. We stand with our veterans and their families, offering support and resources to navigate their healthcare journeys.
Visit our Kidney Cancer and the Military page in the Patient Resource Center, where we share powerful stories from veterans affected by cancer due to exposure while serving. These stories highlight the significance of the recently passed PACT Act, which provides recognition, validation, and medical aid for service-related chemical injuries.
https://bit.ly/MiltaryandKidneyCancer
Today, let us honor our fallen heroes and also support our living heroes by ensuring they receive the care and benefits they deserve. Together, we can continue to advocate for improved healthcare access and research advancements, while standing in solidarity with our military community.
#MemorialDay #RememberingOurHeroes #VeteransStories #PACTAct #supportourheroes
May 29
🇺🇸 Honoring Heroes on Memorial Day 🇺🇸
Today, on #MemorialDay, we remember and honor the brave men and women who made the ultimate sacrifice while serving our country. We pay tribute to their courage, dedication, and selflessness in defending our freedoms.
As we commemorate this day, it is essential to recognize that many service-related deaths result from diseases, specifically #kidneycancer, linked to exposures during military service. We stand with our veterans and their families, offering support and resources to navigate their healthcare journeys.
Visit our Kidney Cancer and the Military page in the Patient Resource Center, where we share powerful stories from veterans affected by cancer due to exposure while serving. These stories highlight the significance of the recently passed PACT Act, which provides recognition, validation, and medical aid for service-related chemical injuries.
https://bit.ly/MiltaryandKidneyCancer
Today, let us honor our fallen heroes and also support our living heroes by ensuring they receive the care and benefits they deserve. Together, we can continue to advocate for improved healthcare access and research advancements, while standing in solidarity with our military community.
#MemorialDay #RememberingOurHeroes #VeteransStories #PACTAct #supportourheroes
A gorgeous day in DC! KidneyCAN joined partner organizations to speak to freshman reps in Congress about the need for CDMRP funding. Thanks to all who joined us!
#AcceleratingCures
May 18
A gorgeous day in DC! KidneyCAN joined partner organizations to speak to freshman reps in Congress about the need for CDMRP funding. Thanks to all who joined us!
#AcceleratingCures
📸 Capturing meaningful connections! Our KidneyCAN team had the privilege of engaging with patients and guests at the "Together Facing Genitourinary Cancer" workshop at Fox Chase Cancer Center last night. Patients also heard from experts on promising treatments for #GUcancers.
We`re proud to provide valuable resources and support to those affected by #kidneycancer! Thank you to FCCC for having us at this event.
May 12
📸 Capturing meaningful connections! Our KidneyCAN team had the privilege of engaging with patients and guests at the "Together Facing Genitourinary Cancer" workshop at Fox Chase Cancer Center last night. Patients also heard from experts on promising treatments for #GUcancers.
We`re proud to provide valuable resources and support to those affected by #kidneycancer! Thank you to FCCC for having us at this event.
We recently caught up with one of our favorites, Dr. Alexander Kutikov of Fox Chase Cancer Center, at the American Urological Association meeting. Tonight, we`re back at Fox Chase for "Together Facing Genitourinary Cancer," a free educational workshop for patients and caregivers.
The program will feature a panel of Fox Chase clinicians and researchers discussing promising treatments for bladder, kidney, and prostate cancer. KidneyCAN, along with industry partners and Fox Chase special services, will also participate in the event by providing helpful resources.
If you`re near Philly, come join us tonight! Info at https://www.foxchase.org/TogetherFacingGUCancer2023
May 11
We recently caught up with one of our favorites, Dr. Alexander Kutikov of Fox Chase Cancer Center, at the American Urological Association meeting. Tonight, we`re back at Fox Chase for "Together Facing Genitourinary Cancer," a free educational workshop for patients and caregivers.
The program will feature a panel of Fox Chase clinicians and researchers discussing promising treatments for bladder, kidney, and prostate cancer. KidneyCAN, along with industry partners and Fox Chase special services, will also participate in the event by providing helpful resources.
If you`re near Philly, come join us tonight! Info at https://www.foxchase.org/TogetherFacingGUCancer2023
"I`m not going to be pre-cancer Laura ever again. I happen to quite like post-cancer Laura, actually, so that`s a good thing."
🧡💚💪✨
At our recent Town Hall, we heard from the best experts -- patients who understand the challenges of living with #kidneycancer. We also learned about strategies for coping and thriving despite the uncertainties. Watch the recording now for inspiration and hope!
WATCH: https://youtu.be/gdYKrEL7OjM
Additional resources for patients at www.kidneycan.org
#kidneycancer #KidneyCAN #TownHall #RCC #survivorship
May 3
"I`m not going to be pre-cancer Laura ever again. I happen to quite like post-cancer Laura, actually, so that`s a good thing."
🧡💚💪✨
At our recent Town Hall, we heard from the best experts -- patients who understand the challenges of living with #kidneycancer. We also learned about strategies for coping and thriving despite the uncertainties. Watch the recording now for inspiration and hope!
WATCH: https://youtu.be/gdYKrEL7OjM
Additional resources for patients at www.kidneycan.org
#kidneycancer #KidneyCAN #TownHall #RCC #survivorship
Looking for inspiration and hope on your #kidneycancer journey? Join us for our Town Hall event on Tuesday, featuring stories of survivorship from three patients.
Register now for this free virtual webinar: https://bit.ly/RCCSurvivorship
#rcc #cancersurvivorship #hope
Apr 22
Looking for inspiration and hope on your #kidneycancer journey? Join us for our Town Hall event on Tuesday, featuring stories of survivorship from three patients.
Register now for this free virtual webinar: https://bit.ly/RCCSurvivorship
#rcc #cancersurvivorship #hope
KidneyCAN`s next Town Hall event is next week on Tuesday, April 25th! We`re talking about #RCC survivorship. Hear from three #kidneycancer patients who are making the most of their time and living fully despite their diagnoses.
Register now! It`s free: https://bit.ly/RCCSurvivorship
Apr 18
KidneyCAN`s next Town Hall event is next week on Tuesday, April 25th! We`re talking about #RCC survivorship. Hear from three #kidneycancer patients who are making the most of their time and living fully despite their diagnoses.
Register now! It`s free: https://bit.ly/RCCSurvivorship
