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!
Does #kidneycancer run in my family?
What do my genes tell me about kidney cancer?
On October 1st, Dr. Nathanson will break down risks of kidney cancer that runs in families in language we can all understand. She will present the very latest research in the field of kidney cancer genetics, offering information to share with family members and inform decision-making.
More information and registration at: https://www.med.upenn.edu/kidney2021/
Today’s science may lead to breakthrough treatments for a life-threatening condition that affects millions. To deliver on that promise, we need sustained, robust funding for the National Institutes of Health.
Today, KidneyCAN joins Rally for Medical Research to ask #Congress to fund the NIH.
Here's why:
• Medical research funded through the NIH, the largest source of funding for medical research in the world, has been a driving force behind many decades of advances that have improved the health of people in every corner of America.
• Thanks in large part to NIH-funded research, Americans are living longer, healthier lives and advances that were once unimaginable, such as sequencing the human genome, have been achieved and have opened a world of unprecedented opportunities for science, medicine and health.
• NIH funding contributed to every one of the 210 new drugs approved by the Food and Drug Administration (FDA) between 2010 and 2016, including 84 first-in-class products to treat a wide range of diseases.
• Investment in medical research can limit future costs of care. The vast majority of our health care dollars are spent on treating chronic diseases that could be managed more effectively with better therapies or, in some cases, prevented. We can meet these challenges head-on, but in order to do so, medical research must be a strong national priority.
#RallyMedRes #FundNIH
Did you know? September 21 is #TakeALovedOneToTheDoctor day!
Building a care team and getting support is a key piece of your cancer journey. Check out KidneyCAN's resources for patients and caregivers at https://kidneycan.org/build-a-care-team/
We just published our August newsletter, filled with exciting #kidneycancer research updates, news, and events. Don't miss a very special feature highlighting an inspiring member of our community.
Have a great weekend!
https://conta.cc/3sRMguh
REMINDER: Do you have questions about participating in clinical trials and how to find trials for you? Do you know the risks and benefits? We are hosting a special Facebook Live with a medical oncologist and clinical trial patient to answer all your questions live, including:
• What is a clinical trial?
• Where do I find clinical trials for kidney cancer?
• What are important questions to ask about a trial?
• What is informed consent?
• What are good clinical practices?
• What can patients expect during a trial?
• What are the risks and benefits of participating in a trial?
• What is the difference between participating at an academic institution versus a freestanding clinical research organization (CRO)?
Will you join us? RSVP now so you get a Facebook notification when we go live: https://fb.me/e/1JfopJa6J
🚨🚨 RESEARCH NEWS
Lenvantinib (by Eisai) + Keytruda (by Merck) is now
U.S. Food and Drug Administration approved for #kidneycancer. Wonderful to have this powerful new combo as a treatment option for patients with advanced #RCC!
Dr. Toni Choueiri of Dana-Farber Cancer Institute says, "This is another important combination option for advanced kidney cancer patients. The results in term of responses including complete responders are the highest to date, albeit with a bit different patient populations. The hope is to continue building on doublets, like pembro/Len with other active drugs, that are able to induce more deep and sustainable remissions."
Great news!
More information here: https://cancernetwork.com/view/pembrolizumab-lenvatinib-approved-by-the-fda-for-the-treatment-of-first-line-advanced-rcc
We lose almost 40 people per day to kidney cancer in the United States. The need for research funding is urgent.
For #DistrictDays, the #kidneycancer community is meeting with members of #Congress all over the United States to ask for robust funding of kidney cancer research.
We want Congress to
1. Maintain the $50 million currently allocated for KCRP for
Fiscal Year 2022.
2. Increase the NIH budget by $3.5 billion for Fiscal Year 2022.
3. Support the creation of ARPA-H (the Advanced Research
Projects Agency - Health) at NIH with an additional $3 billion.
4. Continue supporting legislative initiatives that contribute to
robust, sustainable funding for medical research.
5. Continue to incorporate the patient perspective on legislative policy matters.
Thank you to the many delegates from all over the country who are speaking on behalf of patients, caregivers, friends, and family members today. Thank you to doctors and researchers from the medical community who've made time today to lift their voices with ours.
Let's work together to #fundthecure.
#AcceleratingCures
Thank you to Senator Grassley's office for meeting with us today. Here, KidneyCAN President and #kidneycancer survivor Bryan Lewis, along with our friend and patient Shari, and Dr. Zakharia speak up about the need for robust research funding.
76,000+ will be diagnosed in 2021.
14,000 Americans will lose their lives to kidney cancer this year.
It's urgent! Let's #fundthecure.
#acceleratingcures #districtdays
Here we go!
#KidneyCancer advocates across the #USA are speaking with #onevoice today. We're asking #Congress to #fundthecure with robust research funding for the National Institutes of Health, the Congressionally Directed Medical Research Programs - Kidney Cancer Research Program, and ARPA-H, which will devote specific funding to cancer research initiatives.
We lose 40 people per day to kidney cancer. This is urgent. The time is NOW.
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.
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.
