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
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
