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!
The KidneyCAN team is deeply saddened to share the loss of Gary Poteat. Gary was diagnosed in 2007 with Stage IV #kidneycancer, and in the 15 years since, he and his wife Susan have contributed enormously to research progress and advocacy efforts.
Many of you know Susan as our Medical Science Liaison and an active member of our SmartPatients community. Please read about Gary's extraordinary life and join us in offering condolences to the Poteat family.
https://kidneycan.org/gary-poteat-in-memory/
KidneyCAN is excited to announce the first annual Rock the Run 5K fundraiser! We want YOU to join us!
KidneyCAN was co-founded by Ralph Knapp, who said, “Raising funds for research, clinical trials, and finding a cure for #kidneycancer has become my hope and passion.” KidneyCAN’s past fundraisers included two “Rock the Cure” events that raised over $300,000. These events embodied Ralph’s fun and electric personality and were filled with music, friends, and fellowship.
We lost Ralph in March 2022. To honor his memory and continue his quest to save lives, we are launching an annual Rock the Run fundraiser.
· Join us in Philly on October 7th, or create your own local event through October 15th!
· As big or small as you want to make it!
· Walk, run, bike ... you can ROCK it your way!
· Register as an individual, or join one of our teams!
Let’s #acceleratecures for kidney cancer! 🎸
MORE INFO & REGISTRATION: https://kidneycan.org/rock-the-run-kidney-cancer-research-22/
Did you catch our latest newsletter? Highlights for the Kidney Cancer Research Summit in October, research funding advocacy news, inspiring patient stories, info on clinical trials, and more!
#kidneycancer #kidneycan #acceleratingcures
Link in our stories, and you can subscribe on our website!
https://conta.cc/3dXmf9o
Explore more!💪✨
Our friend Bruce shares his experiences staying active and safe despite challenges brought on by stage IV #kidneycancer and a #pandemic.
We can all learn from you, Bruce! Thank you for telling your story for #KidneyCANDID.
WATCH NOW: https://youtu.be/kdnWclM6694 (link in stories)
A couple of photos from today's #DistrictDays advocacy event, where we've gathered patients, caregivers, friends, family, doctors, and researchers to tell Congress that we need robust #research funding for #kidneycancer through the #NIH and the #CDMRP. A few things to notice:
· Our efforts today spanned the entire US, with folks meeting virtually as far east as New England and as far west as Hawaii!
· The experts gathered to speak up for research funding represent the University of Hawaii, Dana-Farber Cancer Institute, Brigham and Women's Hospital, Beth Israel Deaconess Medical Center.
· Every advocacy meeting is data-packed and backed with numbers ... whether you're a doctor, researcher, patient, or caregiver, we make sure you have the information needed to show Congress the importance of funding kidney cancer research.
Thank you to this all-star team of advocates for their work today! You're #acceleratingcures!
Today and tomorrow, KidneyCAN and our partners are telling Congress to #fundthecure for #kidneycancer!
We're meeting with representatives from all over the United States to share the urgent need for#RCC #research funding.
Thanks to Katie with @SenatorBurr's office for supporting robust funding for the @NIHgov and the Congressionally Directed Medical Research Programs.
We are #accleratingcures! Thank you to all of our advocates -- patients, caregivers, family, friends, doctors, and researchers -- who've lifted their voices for our community today!
It's not too late to join us for today's #KidneyCancer #TownHall!
Learn about #clinicaltrials and how to explore your options with two of the nation's leading #research experts.
Register at https://kidneycan.org/clinical-trials-for-kidney-cancer/
It's a simple and sad fact. We aren't making progress fast enough.
We need YOU to help us on August 8-9 when we tell Congress to #fundthecure for #kidneycancer.
District Days Advocacy Event
• Meet with your House and Senate representatives via Zoom.
• Tell them about the impact of kidney cancer on your life.
• Ask for funding for research through the National Institutes of Health (NIH) and Congressionally Directed Medical Research Programs - CDMRP.
It's easy and so impactful. You just tell your story and use the resources provided by KidneyCAN to make specific funding requests. We'll help you every step of the way.
Learn more and register here: https://kidneycan.org/2022-district-days/
#rcc #kidneycancerawareness #cancerresearch
Reminder! This event is tomorrow, and it's not too late to join!
You are invited to the free, virtual Kidney Cancer Patient and Caregiver Education Symposium, hosted by @seattlecancercarealliance in partnership with KidneyCAN and Kidney Cancer Association. During the event, attendees will hear medical experts discuss newly emerging treatment options, brain metastases, surgical advancements, and supportive care such as nutrition along with introductions from patient advocacy and support groups.
Date: July 16, 2022 (Saturday)
Time: 9am to 1:30pm PDT
Co-Chairs: Scott S. Tykodi, MD, PhD and John L. Gore, MD, MS, FACS (Physicians, Seattle Cancer Care Alliance)
Partners: KidneyCAN, Kidney Cancer Association, and Julie & Art Chmura (Seattle Kidney Cancer Support Group)
Format: Virtual (via Zoom)
Register here! https://bit.ly/SCCASymposium
#kidneycancer #RCC #patienteducation #empoweredpatient #acceleratingcures
