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
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.
