Building a Care Team

Kidney Cancer is a relatively rare cancer. Getting an opinion at a comprehensive cancer center with a specialty in kidney cancer is an important start to building your care team.

Kidney cancer is a unique diagnosis, and while general medical oncologists are a fantastic resource, it’s still important to get care from those specifically experienced in treating kidney cancer, particularly if your cancer is advanced or a rare subtype of kidney cancer. In this video, some of the nation’s leading kidney cancer specialists, along with patients and caregivers, discuss the things you might think about as you build a care team.

VISIT THE TRANSCRIPTS PAGE FOR PRINTED NOTES FROM THE VIDEO

Finding a comprehensive cancer center

A comprehensive cancer center has exceptional specialty care for kidney cancer treatment. For newly diagnosed patients these are excellent choices for care or second opinions. For patients with a rare or hereditary kidney cancers, a center with specialty in kidney cancer is especially important in your long term care. 

NCI-Designated Cancer Centers

NCI-Designated Cancer Centers deliver cutting-edge comprehensive cancer treatments to patients in communities across the United States. Building a care team starts with selecting a top comprehensive cancer center a manageable distance from your home to support your care. An NCI-designated Cancer Comprehensive Center means it has met National Cancer Institute standards for cancer prevention, clinical services, and research.

Some of these sites have additional recognition for specialty in kidney cancer as SPORES or Kidney Cancer Consortium sites.

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.

VISIT OUR INTERACTIVE USA MAP FOR CANCER CENTER INFORMATION STATE BY STATE

VISIT THE COMPREHENSIVE CANCER CENTER INFORMATION PAGE FOR LISTINGS STATE BY STATE

NCI Spore Grant Centers

To earn a highly competitive NCI SPORE grant institutions must demonstrate a high degree of collaboration between first-rate scientists and clinicians and show excellence in translational research projects. Kidney cancer has 2 centers recognized with a NCI SPORE grant – Dana Farber/Harvard Cancer Center and UT Southwestern.

Kidney Cancer Research Consortium

The Kidney Cancer Research Consortium members are a coalition of national champions of kidney cancer research with strong backgrounds in scientific and clinical leadership. In addition to these strengths, the investigators leading the KCRC bring experience in early phase therapeutic development with a strong translational research emphasis. 

Speciality care for rare and heriditary cancers

“The NIH Clinical Center is the nation’s largest hospital devoted entirely to clinical research.”

SPORES and Kidney Cancer Research Consortium sites also have significant expertise in rare kidney cancer subtypes.

Interactive Cancer Center Location Map

Finding Care Outside the US

International Kidney Cancer Coalition has 40 affiliates around the world. We suggest you use IKCC or a local affiliate to help you locate a care site.

Another alternative is to go to Clinicaltrials.gov and search on “Kidney cancer” and “country.” Doctors in your country offering trials are good choices for expertise on your care team.

Understanding the Different Physicians

Patients with a new diagnosis of ‘renal mass’ may meet several physicians with different, but similar sounding specialties. Here’s a quick list of physicians often on the kidney cancer oncology team.

UROLOGIST

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A Urologist is a doctor who specializes in treating diseases of the urinary system. This is usually the first doctor that a patient with a new renal mass will be referred to. The urologist is typically the gatekeeper for referral to oncology care for patients with a mass suspicious for renal cancer.

Urologic oncologist

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A Urologic Oncologist is a urologist who has special training in diagnosing and treating cancers of the urinary tract, including surgical options. A Urologic Oncologist has a deep specialization in managing kidney cancer.

MEDICAL ONCOLOGIST

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A Medical Oncologist has specialized training in using drugs to treat cancer. Some medical oncologists specialize in Genitourinary cancers. Some are particularly interested in kidney cancer and in offering kidney cancer clinical trials to their patients. Patients whose cancer has spread beyond the kidney will usually be referred to a medical oncologist.

RADIATION ONCOLOGIST

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A Radiation Oncologist has special training in using radiation to treat cancer. While radiation is not standard for all kidney cancer patients, some whose cancer has spread will have a referral to a radiation oncologist to help with control of a difficult or painful area.

Get Organized for Your Visits

Organize questions for your visits, documents for family members, contact info for your other doctors, register for medical portals, and a list of drugs with frequency and strength.

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.

Take the time to read the useful information from the cancer.net and American Cancer Society websites. Click the website images to open the page.

Treatment and Trial Options

Clinical trials are research studies that involve people. Any time you or a loved one need treatment for cancer, clinical trials are an option to think about. 

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:

Understanding Your Kidney Cancer Diagnosis

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Building a Care Team

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Treatment & Trial Options

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Living Well with Kidney Cancer

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Dr. Brandon Manley: Physician, Scientist, Advocate

Dr. Brandon Manley: Physician, Scientist, Advocate

Brandon Manley, M.D., is a urologic oncologist who specializes in genitourinary oncology, with a focus on patients with kidney cancer. He currently practices at Moffitt Cancer Center in Tampa, Florida, where he lives with his wife Aimee, and his two daughters Sadie and Brooklyn. The family enjoys...

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Dr. Brandon Manley: Physician, Scientist, Advocate

Brandon Manley, M.D., is a urologic oncologist who specializes in genitourinary oncology, with a focus on patients with kidney cancer. He currently practices at Moffitt Cancer Center in Tampa, Florida, where he lives with his wife Aimee, and his two daughters Sadie and Brooklyn. The family enjoys...

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Dr. Brandon Manley: Physician, Scientist, Advocate

Dr. Brandon Manley: Physician, Scientist, Advocate

Brandon Manley, M.D., is a urologic oncologist who specializes in genitourinary oncology, with a focus on patients with kidney cancer. He currently practices at Moffitt Cancer Center in Tampa, Florida, where he lives with his wife Aimee, and his two daughters Sadie and Brooklyn. The family enjoys...

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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...