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!
Plan to join us next week on Tuesday for one of our most popular events!
Dr. Rana McKay of UC San Diego and Dr. Hans Hammers of UTSW will discuss the latest research in #kidneycancer -- both what we learned in 2022 and what we can look ahead to in 2023. Register in advance to submit your questions to the panel.
⭐ Looking Back, Looking Forward: The Latest News in Kidney Cancer Research
📆 Tuesday, January 31st
🕧 6:00-7:00 pm ET
💻 FREE Zoom webinar
✏️ Sign up at kidneycan.org
Following the Town Hall, we will have an informal Zoom social for patients and caregivers to connect.
Don't miss this! We can't wait to see you!
This is one of our most-anticipated annual events, and we've got a rockstar lineup for the 2023 edition!
▶️ Looking Back, Looking Forward: The Latest Research in Kidney Cancer
▶️ Tuesday, January 31st
▶️ 6:00 pm ET
▶️ Free Zoom Webinar
Dr. Rana McKay of UC San Diego Health will review the 2022 #kidneycancer research breakthroughs, and Dr. Hans Hammers of UTSW will discuss what we can anticipate in 2023.
Don't miss out! Ask your questions when you register, and our panel will include what we can in the program!
Register now at https://kidneycan.org/2023-kidney-cancer-research-town-hall/
Our partner @jnkcf is hosting #KidneyCancer conversations, and the next one up features one of our favorite teammates! Meryl is speaking about navigating life with kidney cancer.
This event is free!
Register at https://jnfkidneycancer.org/navigating-life-with-kidney-cancer-a-survivors-testimony-with-meryl-uranga/
Today we honor the life and legacy of Dr. Martin Luther King, who said in 1966: "Of all the forms of inequality, injustice in health is the most shocking and the most inhuman because it often results in physical death." He was speaking at the Medical Committee for Human Rights annual meeting in Chicago.
The mission of KidneyCAN is to accelerate cures for kidney cancer. We believe that means accelerating cures for everyone through a commitment to practices that promote equity, diversity, and inclusion. Here's to continued antiracist work that addresses systemic inequities in health care, including access to clinical trials.
LIVE in ONE HOUR!
Some studies have shown that people with #kidneycancer are at increased risk of developing kidney disease.
What's the best way to keep your kidneys healthy during and after treatment for kidney cancer? Do you know the signs and symptoms to prompt a call to your doctor?
Our experts can answer these questions and more. Join us!
Event link: https://fb.me/e/3Qk7dLEvA
Do you know how to keep your kidneys healthy during #kidneycancer treatments? What about after treatments?
Join us for a special Live stream event where we’ll answer your questions on protecting kidney health, streaming tomorrow at 2 pm ET on Facebook, YouTube, & Twitter!
RSVP now to get notifications on FB: https://fb.me/e/3Rig4xARG
Congress is poised to approve $50 million dollars for #kidneycancer research in 2023!
This year, we attended 390 Capitol Hill meetings with over 300 advocates working the Hill. We are grateful to you, our grassroots supporters, for helping to make this happen.
The holiday season can be busy and stressful, even when you're feeling great! When you're juggling hosting and shopping and traveling while ALSO living with #kidneycancer, it can be too much.
We gathered some experts to share tips for coping and caring for yourself during the holidays!
WATCH: https://youtu.be/l4miZPznhQQ
When you're living with #kidneycancer, the holidays sometimes have to take on a "new normal," with adjusted expectations, and that's okay.
If you're overwhelmed or struggling to feel festive, check out the Town Hall webinar we hosted to help folks handle the holiday season!
WATCH: https://youtu.be/l4miZPznhQQ
#livingwithcancer #cancercare #selfcare #holidayselfcare #rcc #kidneycan
Season of Inspiration! We asked our community to share what inspires them on hard days.
Bill says, "Knowing that kidney cancer can return at any time reminds me that part of each day must be spent doing something joyful. In the many years since diagnosis, I’ve found that supporting animal adoption brings happiness to many people."
Love this! Do something JOYFUL every day.
What makes you feel #inspired this season? Please share your story with us at [email protected] to be featured on our pages!
