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
CANCER.NET
www.cancer.net/cancer-types/kidney-cancer
INTERNATIONAL KIDNEY CANCER COALITION
www.ikcc.org
CANCER AND CAREERS
Strategies for Coping with Cancer in the Workplace
www.cancerandcareers.org/en/at-work
Join Our Grassroots Army
Join Us!
Recently diagnosed with COVID-19? Bristol Myers Squibb's COVID treatment trial -- mAb Duo -- is now up and live on the NIH Rise Above COVID site for patients. This Phase 2 trial is for COVID-positive patients experiencing symptoms who are standard risk to progressing (not only high risk patients). The Phase 2 trial enrollment is now live in the US at 53 sites.
You may already know that we at KidneyCAN are big proponents for clinical trials. Here's why:
Why should I join a clinical trial?
Clinical trials are part of clinical research and at the heart of all medical advances. Clinical trials look at new ways to prevent, detect, or treat disease.
Treatments might be new drugs or new combinations of drugs, new surgical procedures or devices, or new ways to use existing treatments.
The goal of clinical trials is to determine if a new test or treatment works and is safe. Clinical trials can also look at other aspects of care, such as improving the quality of life for people with chronic illnesses.
People participate in clinical trials for a variety of reasons. Healthy volunteers say they participate to help others and to contribute to moving science forward. Participants with an illness or disease also participate to help others, but also to possibly receive the newest treatment and to have the additional care and attention from the clinical trial staff.
Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future.
We’d love to have you for Kidney Cancer District Advocacy Days!
You don’t need any prior experience or special skills. We provide you with training and a toolkit so that you can share your story with those who make decisions about research funding.
You’ll help them understand the impact of kidney cancer on people’s lives and the urgent need for a cure.
Join us and make your voice heard!
Register at https://kidneycan.org/2021-district-days/
We’d love to have you for #KidneyCancer District Advocacy Days! You don’t need any prior experience or special skills. We provide you with training and a toolkit so that you can share your story with those who make decisions about research funding. You’ll help them understand the impact of kidney cancer on people’s lives and the urgent need for a cure.
Join us and make your voice heard!
Register at https://kidneycan.org/2021-district-days/
Did you miss our LIVE viewing of "Kidney Cancer: Getting Back on Track After Treatment"? You can still watch the segment here!
https://fb.watch/v/HbgmOw6J/
Patients and caregivers! Can you give a couple of hours to tell your congressperson we need their support for #kidneycancer research?
We'll be making advocacy calls August 9-10th. You will not make this call alone! We give you training, support, and a script. Members of our advocacy team will be with you at every step!
A call or virtual visit means so much more than a letter. This is how we work to #fundthecure!
Register at https://kidneycan.org/2021-district-days/
You are invited to the free, virtual #KidneyCancer Patient and Caregiver Education Symposium, hosted by KidneyCAN in partnership with Seattle Cancer Care Alliance.
▶️ new perspectives on kidney cancer genetics
▶️ developments in imaging techniques
▶️ medical therapy
▶️ surgical advancements and laboratory research
▶️ patient advocacy and support groups
Date: July 17, 2021 (Saturday)
Time: 9am to 1:15pm PDT
Format: Virtual (via Zoom)
FREE registration: https://bit.ly/KidneyCancerPatientEd
An informed patient is an empowered patient!
Did you catch our June newsletter? Don't miss these important research updates and upcoming events for #kidneycancer patients and caregivers.
https://conta.cc/3xW05sK
"Hope can be a powerful medicine."
Thank you, Dr. Wilson, for talking to us about your research, advocacy, and hope for patients!
https://kidneycan.org/dr-john-t-wilson-a-lot-of-reason-to-hope/
On August 9-10th, the #kidneycancer community will speak as #onevoice to ask Congress to fund kidney cancer #research for the Congressionally Directed Medical Research Program and the National Institutes of Health.
Don’t miss this opportunity to share your story and let Congress know how kidney cancer has impacted your life. You do not need advocacy experience, just a passion for fighting kidney cancer!
Register at https://kidneycan.org/2021-district-days/
There's still time for #kidneycancer patients and caregivers to complete the global health survey and receive a personalized snapshot of your emotional wellbeing. This can be a valuable tool for you to use when talking with your care team about your overall health.
On #WorldKidneyCancerDay, we are talking about #mentalhealth. We want you to know you're not alone, and there are resources that can help you if you're one of the 96% of kidney cancer patients or caregivers who struggle with the psychological impact of cancer.
Use this link to get started: http://bit.ly/WKCD-mental-health-survey
KidneyCAN is a registered 501(c)(3) nonprofit and does not receive any funding through the Congressionally Directed Medical Research Programs (CDMRP) or KCRP (Kidney Cancer Research Program). Our work is funded by grassroots donors in the kidney cancer community.
