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KidneyCouch resource library for kidney cancer and chronic kidney disease. Empowering Patients Get informed. This website is crafted to provide links to educational resources, inspirational stories, and informative articles to help those navigating the challenges of kidney cancer and/or chronic kidney disease. The resources provided on this website are informational and educational only and not an endorsement of their content. Each patient needs to discuss their individual circumstances with their medical provider. KidneyCouch is here to uplift and empower you in your journey with kidney cancer. Stay informed, connected, and supported. Hopefully you will find the resources and testimonials helpful. Anatomy Basics Image by Adobe Stock, July 14, 2023 Kidney Anatomy, Wikipedia Illustration by A. Hoofring, 2007 The Library is Open The resources in this library are just a sampling of those accessible at your fingertips. Kidney Cancer Chronic Kidney Disease Kidney Stones Prognostic Models General Diet

ccRCC Stage T3a, Grade 3 These images are from my personal journey with Clear Cell Renal Cell Carcinoma. I was diagnosed in January 2023 and had a radical nephrectomy in February 2023. jeff kallis CT Scan Image This is an image from the CT scan I had on January 25, 2023. The reason for the CT Urogram was to confirm that I had a kidney stone(s) and pinpoint where the stone(s) was located. I did have a 6 mm kidney stone from my left kidney, lodged in the ureter at the entrance of the bladder and refusing to move further. In addition, something more sinister was identified. A 5 cm mass in my other (right) kidney. Thank God for that kidney stone. I had no symptoms from the kidney mass itself, in the right kidney. Kidney Stone Kidney Tumor Pathology - Kidney This is my right kidney that was removed during my radical nephrectomy. The highlighted area is the kidney mass. The pathologist at Mayo Clinic, Dr. John Cheville, diagnosed the mass as Stage T3a, Grade 3, with renal vein invasion. The mass was a higher stage and grade and was more invasive than what could be seen with imaging alone. The time from when I was first tested for symptoms (January 20, 2023) until the tumor was removed from my kidney (February 15, 2023) was 27 days. That's one of many benefits from being seen at an integrated medical practice (Mayo Clinic Rochester) that specializes in kidney cancer. Profoundly grateful for the care and compassion I have received.

My Story I published a book about my experience with kidney cancer and chronic kidney disease. Check it out on Amazon Also, see my guest post on the Kidney Cancer Association website. Follow up post - Survivorship guest post - Kidney Cancer Association. Interview with The Patient Story . KidneyCouch Overview - pdf Welcome to this site. In January 2023 I was diagnosed with kidney cancer (ccRCC, Stage 3, Grade 3). My wife and three boys have been great support and encouragement as I have ridden this roller coaster ride with white knuckles on a few unexpected turns. I found that reaching out to online kidney cancer and chronic kidney disease (CKD) support groups helped me through the first two years of this journey. After sharing my experience and listening to those of others on a few social media sites, it inspired me to create a community that places an emphasis on trusted resources to complement patient experiences. I am a firm believer that your physician should not care more about your medical needs than you do. As a person who is logical to a fault, I need data from reputable medical centers and trusted resources to provide education and understanding of kidney disease. One of the primary goals of this site is a search for the best resources to help patients discuss their healthcare options with their physicians and make informed decisions. A retired administrator from Mayo Clinic Rochester, I have experience providing administrative support and direction for the Department of Laboratory Medicine and Anatomic Pathology, Preventive Medicine, and the Emergency Department to name just a few. I never expected to be on this side of the discussion about cancer, chronic kidney disease, kidney stones. Most importantly, I am blessed with a beautiful family. I hope you find the value you are looking for in this community. Jeff Kallis Days Since My Radical Nephrectomy Introduction to Around the Couch Podcast Purpose of This Site This website was developed and is maintained for the sole purpose of providing a "Library" of resources for patients dealing with kidney cancer, chronic kidney disease, or kidney stones. There is no fundraising, sponsors, or business activities of any kind. The information included on this website is for informational purposes only. This site does not provide medical advice.

General information regarding kidney cancer, chronic kidney disease, kidney stones, diet. Kidney Cancer - General Information The Basics About Kidney Cancer What You Need to Know NCCN Guidelines - Patient Kidney Cancer Treatments Types of Kidney Surgery Type - Stage - Grade Kidney Cancer Stages Types and Grades Types - AUA Basics Treatment / Surveillance Active Surveillance Follow Up for Kidney Cancer NCCN Treatment Details RCC Follow Up (pdf) - AUA Follow Up Guidelines - EAU Predicting Outcomes in RCC Find a Physician These are several links about providers or where to seek care for kidney cancer diagnosis and treatment. The sources are provided for informational and educational purposes only and not a recommendation from KidneyCouch. Finding Cancer Care - National Cancer Institute Treatment Center Finder - Kidney Cancer Association Best Hospitals for Cancer - U.S. News & World Report To play, press and hold the enter key. To stop, release the enter key.

March is Kidney Disease Awareness Month The color ribbon for Kidney Cancer is orange. For Chronic Kidney Disease, it is green. ORANGE UP! The month of March is Kidney Cancer Awareness month. Light up the outside lights of your house, ask City leaders to light up a prominent structure, or simply wear an orange ribbon to bring awareness to kidney cancer. Kidney Cancer Awareness Association - Orange Up Plummer Building The Plummer Building, Mayo Clinic, Rochester, Minnesota, lit up in orange in March 2024. Friends of Stonehedge Waterfall The Friends of Stonehedge Waterfall, Rochester, MN, was lit up in orange in the month of March 2024 to bring awareness to kidney cancer. Each March going forward the waterfall will be glowing orange. Throughout the year, the Stonehedge Waterfall is lit up in different colors for cancer awareness and other causes. In April, the colors are green and blue for National Donate Life Month, honoring individuals who donate organs to others. What a great way to bring awareness and honor to these causes and menaces. There are 57 common cancer ribbon colors. Shout out to the Orange and Green! GREEN UP! March is also Chronic Kidney Disease (CKD) Awareness month. Green is the ribbon color to bring awareness. University of New Mexico Celebrates Green

Active surveillance of kidney cancer before or after a nephrectomy is critical. Surveillance - After Nephrectomy Clear cell, renal cell carcinoma (ccRCC) patient's that have a partial or radical nephrectomy are usually followed up under a surveillance program based on their individual case. General guidelines, such as those outlined by Dr. Brad Leibovich, Mayo Clinic, serve as recommendations for physicians to follow patients who have had a nephrectomy, monitoring the patient for any recurrence of renal cancer. Dr. Leibovich and his team developed the Progression-Free Survival Score to classify patient's as low, medium, and high risk for recurrence. Patient Classification* The Leibovich Model recommends imaging / follow up for all patient classifications at 3 months post-surgery to check for recurrence as well as establish a new baseline for the patient for comparison against future imaging / testing. The higher the risk a patient is for recurrence, the more frequent are the intervals for ongoing testing. Stage I and II (Low Risk) 3 months post op CT or MRI with contrast of abdomen Chest x-ray Basic Metabolic Panel (BMP) then, Annually for 5 years after surgery (same testing as above) then, > 5 years Renal ultrasound Chest x-ray at clinical discretion Stage III (Intermediate Risk) 3 months post op CT or MRI with contrast of abdomen/pelvis Chest x-ray or CT Basic Metabolic Panel (BMP) then, 6 month intervals for 3 years (same testing as above) then, >3 years - Annually (same testing as above) then, > 5 years - Patient Specific Based on individual patient's case / history Stage IV (High Risk) 3 months post op CT or MRI with contrast of abdomen/pelvis Chest x-ray or CT Basic Metabolic Panel (BMP) then, 4 month intervals for 2 years (same testing as above) then, >2 years at 6 month intervals (years 3 to 5 after surgery) (same testing as above) then, > 5 years - Annually (same testing as above) *Based on published Mayo Clinic risk score (Leibovich BC, Cancer 2003;97:1663-1671) National Comprehensive Cancer Network Kidney Cancer Guidelines The National Comprehensive Cancer Network (NCCN) is a not-for-profit alliance of 33 leading cancer centers devoted to patient care, research, and education. The NCCN develops resources that present valuable information to stakeholders in health care. Part of their mission is creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers. One of the guidelines is the recommended treatment for patients with kidney cancer. The most recent Kidney Cancer Treatment Guidelines (March 2025) can be viewed on the NCCN website in pdf format. These guidelines are detailed and extensive. Well worth your time and attention if you want to understand the details of the management and treatment guidelines for kidney cancer at all stages. An important note is that the guidelines are just that - guidelines. No single follow-up plan is appropriate (fits) all patients. Management should be individualized based on each patient's unique medical condition and other contributing factors.

Chronic Kidney Disease The Basics Overview Kidney Education Kidney Biopsy - youtube CKD - CDC CKD - NIH CKD - NLM Kidney Disease - NIH Specifics Stages of CKD eGFR Explained Graphics Cystatin C Stage 3a CKD All About CKD What You Need to Know Kidney Tests Explained Publications Cystatin C vs. eGFR Eating Right for CKD Kidney Function Decline in cT1a Patients eGFR After Nephrectomy General Topics Measuring Your Kidney Health GFR eGFR Calculator Pathology Tests for CKD Symptoms & Causes Life With A Single Kidney Kidney Failure Risk Equation (KFRE) This calculator predicts your risk of kidney failure in patients with chronic kidney disease (CKD). There is a calculator for Kidney Cancer (after a partial or complete nephrectomy) as well as the KFRE calculator f or all other patients with CKD.

Kidney Stones Not all stones are alike. Calcium Oxalate Overview Types Kidney Stone Diet Treatment Options Treat and Prevent Other Links Ten Facts About Kidney Stones What Causes Kidney Stones How to Prevent Kidney Stones Calcium Oxalate Stones - Stone Relief.com Renal Calculi, Nephrolithiasis FAQ's - Kidney Stones Kidney Stones - Cleveland Clinic Kidney Stones Patient Guide - Urology Care Foundation Kidney Stones - JAMA Network Visual Guide to Kidney Stones - Slideshow Good Food for Kidney Stones Cookbook - AUA © Copyright Best Kidney Stone Procedure for Me - MUSIC Kidney Managing Pain_Urinary Symptoms post-Ureteroscopy Low Oxalate Diet Guidelines for Stone Formers - UMHS Nutrition Guidelines for Preventing Kidney Stones - Mayo Clinic To play, press and hold the enter key. To stop, release the enter key.

Kidney Cancer Prognosis and Outcomes The Basics Understanding Cancer Prognosis Kidney Cancer - MD Anderson Survival Rates for Kidney Cancer Cancer Survival Rate Explained Frequently Asked Questions T1Renal Masses - MUSIC Urology Cancer Survival Rates - What it Means for Your Prognosis Prognostic Models Predicting Outcomes in RCC Kidney Cancer Nomogram - MSK Cancer Prediction Tools - A Few Leibovich 2018 Model Leibovich 2018 Model Calc. Prognostic Factors - EAU Head-to-Head Comparison of Prognostic Models Non-Mets Chromophobe RCC Publications Prediction Models After Radical Nephrectomy Postoperative Prognostic Model Surveillance Strategies for RCC Comparison of Prognostic Models Prognostic Model Scoring System Optimal Scoring System? Machine Learning Datasets Cancer Survival: An Overview of Measures, Uses, and Interpretation Prognostic Models - Comparison of factors included in a few models. Not all prognostic (predictive) models for kidney cancer recurrence or overall survival use the same clinical criteria. The information below builds on the study "Post nephrectomy management of localized renal cell carcinoma. From risk stratification to therapeutic evidence in an evolving clinical scenario.", April 2023, by Dr. Chiara Ciccarese (researcher at Università Cattolica del Sacro Cuore and Oncologist at Fondazione Policlinico Gemelli IRCCS. Rome, Italy) and colleagues. Using this work, I build upon the model as well as entered my clinical case through each model for comparison of predicted outcomes. The models included in the analysis are designed for post-nephrectomy (partial or radical) for renal cell carcinoma (RCC) of the three most common subtypes - clear cell, papillary, and chromophobe. As pointed out in the literature, physicians / scientists in the medical field have developed prognostic models to improve the ability to predict accurately the outcome for patients who are treated surgically for RCC since 2001 (or earlier). Prognostic algorithms can be used to counsel patients, determine the need for adjuvant therapy, stratify patients for clinical trials, and develop appropriate postoperative surveillance programs that are tailored to a patient's risk for disease progression. [1] It needs to be stressed that calculations from any prognostic model is an average based on studies conducted to-date, are usually based on data that is at least five years old and does not take into account advances in treatment or changes in general, an individual's overall health, lifestyle, environmental factors, etc. When using a prognostic nomogram, the calculations for your predicted cancer recurrence or overall survival are not specific to you. They are averages based on similar patients that have been included in a database. That being said, many kidney cancer patients like me, want a more informed prediction of RCC recurrence and overall life expectancy rather than none at all. Physicians / medical centers that utilize data from prognostic models that have been validated by research studies in addition to the physicians' ongoing experience in treating patients and their outcomes, helps to inform regarding the ongoing accuracy of the existing prognostic models in the treatment recommendations for a patient's unique clinical presentation. The models will continue to advance as the science in the medical field does - with the discovery of new biomarkers, molecular features, gene and expression profiling, etc.[2] Post Nephrectomy Prognostic Models - Criteria Included in Selected Models Comparison of Predicted Results for My Clinical Situation - Jeff Kallis Details of My Prognostic Results Prognostic Models - Survival Rates Explained - NIH [1] A Review of Prognostic Pathologic Features and Algorithms for Patients Treated Surgically for Renal Cell Carcinoma, Christine M. Lohse MS, John C. Cheville MD, Clinics In Lab Medicine, June 2005, https://www.sciencedirect.com/science/article/abs/pii/S0272271205000144 [2] Prognostic factors in renal cell carcinoma, Alessandro Volpe 1 , Jean Jacques Patard , World J Urol, June 2010, https://pubmed.ncbi.nlm.nih.gov/20364259/

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Kidney cancer and chronic kidney disease resource library. Contact Us Feel free to reach out with any questions, feedback, requests to add a resource to this site, or comments. Email jeff@kidneycouch.com Social Media First Name Last Name Email Message Send Thanks for submitting! Thank You for sitting around the couch with us.