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I always did well in high school and college when it came to grades. I studied hard. I was prepared as best I could be. One of the common themes for kidney cancer patients (maybe all cancer patients) is the anxiety of an upcoming surveillance exam. Generally, about two weeks before the exam date patients tend to get more anxious. More nerves. More questions. More need for reassurance. It's the waiting for a report that you know is coming due. A report card of sorts. Hopefully not a final report card. But your mind goes there. When I first sat (laid down) for my CT scan to verify whether I had kidney stones, my report card came back with an unexpected result. I had to doublecheck the answer. I was sure my test was mixed up with someone else's. I was expecting a zero for anything but a kidney stone sitting somewhere. Turns out I had a grade 3 tumor in one of my kidneys. That's not a good report. Nowhere close to an A. I had a lot of studying to do to fix this. Maybe I could take the test over again. Study harder. Pass with flying colors next time. My doctor said the score was final. No matter how many times I retake the test, the result would be the same. Damn.

I'm not a patient person. I am a patient, but that doesn't mean I'm patient. Waiting for the follow up surveillance exam (in two weeks) is what creates anxiety. Not just for me, but for other patient's in the same boat. It's like floating along with one paddle instead of two. Hard to navigate, hard to steer your mind in the right direction. It's the unknowing. I want to be all-knowing. As my Auntie Terry will attest to, waiting for 5 to 7 days to get the pathology report is nerve wracking and unsettling. That's why I write. To put my thoughts on paper. It helps to talk about it out loud. On a keyboard. That allows you to go back and make corrections. If only I could go back and erase the cancer. If only we mere mortals had the power. The Delete Key doesn't work for that. Pretty worthless key in that regard. I'm part of the KCCure (Kidney Cancer Cure) on-line support group. The group is on a Facebook board. Access is only for confirmed patients with kidney cancer (about 80% of its over 2,700 members worldwide). The other 20% are healthcare providers / professionals who are interested in kidney cancer. The group is very supportive. We all share our status and stories, look for common practices for our particular stage and grade of tumor, and receive a lot of positive feedback and thoughts. We need that. We get that. For kidney cancer patients (renal cell carcinoma - clear cell in particular), even though you have the entire kidney that cancer invaded removed, the cancer can show up somewhere else in the body later. It's still renal cell carcinoma - clear cell even though it shows up somewhere else in your body. The cancer cells traveled elsewhere. The border isn't closed at the kidney. It's wide open. That's where the worry comes from. Will it show up somewhere else?

Illustration by D. Bicker, pixabay.com When I searched the vast internet to learn more about patients with kidney cancer, I found that most patients who are diagnosed with kidney cancer are blindsided by it because kidney cancer rarely has symptoms. That was true in my case. Like many other cases, my cancer was discovered on a CT scan that was looking primarily to see where the kidney stone(s) was located. The secondary concern (a rule-out diagnosis if you will) was to look for anything more sinister. That begs the question...should total body scans or CT scans of the abdomen and pelvis be done more frequently to screen for kidney cancer in populations where kidney cancer is more prevalent? Early detection increases the likelihood of a better prognosis. But what are the downsides of scanning your body looking for something sinister? Do you really want to know what is growing or lurking in your body? It’s kind of like learning how sausage is made. After you do, you kind of wish you hadn’t. One downside is the unnecessary worry that can be created by seeing shadows within that are nothing to be concerned about. Another is the cost. Health insurance companies don't like to cover the cost of medical services that are not based on an indication to justify it. That makes sense to a point. The counterpoint to that argument is that detecting medical issues early can reduce the total healthcare costs in general. It's a preventative approach rather than waiting for a bigger shoe to drop. Another question to be asked is who would / should be tested for kidney cancer? Kidney cancer only makes up about 4 percent of cancer diagnoses in the United States (about 82,000 new cases each year). Worldwide it is even less than 4 percent. Does it make sense to test 100 percent of the population to detect the 4 percent who have kidney cancer? It doesn't seem cost effective. Unless you are the one with cancer growing in your kidney. The American Cancer Society tells us that most people diagnosed with kidney cancer are between ages 65 and 74. That is when patients are diagnosed with cancer. How long had the cancer been present before diagnosis? Kidney cancer usually doesn’t present with symptoms. That's when a CT scan (or MRI) needs to be done - years before the cancer is detected. For the population that is at higher risk. I was age 61 when the mass was detected, and it had been there between 5 and 14 years. Would a CT scan have picked up the mass when I was age 47 to 50? I’d like to think so. Kidney cancer is very uncommon in people younger than age 45. So, scanning for kidney cancer before age 45 would seem unnecessary. Maybe starting at age 45? Kidney cancer is about twice as common in men than in women and it is more common in African Americans, American Indians, and Alaska Natives. The only category I fit of these is being male. If you are a smoker, diabetic, or like to drink more than most, you are at higher risk of getting kidney cancer. None of these fit my case. Yet, I got renal cell carcinoma-clear cell. I wouldn't be on anyone's radar as a likely candidate for a positive diagnosis. I wouldn't fit the criteria for having a body scan to search for this nemesis. Truth be told, I’m not sure I would have signed up for one had it been offered to me anyway. But other people likely would. Like many kidney cancer patients, I had no symptoms. Had it not been for a kidney stone that was setting off alarm bells, I would not have had a clue there was cancer within. It's too bad our bodies are not transparent. It would make it so much easier to see what is going on. Probably best we don't have that close a view. As the saying goes, beauty is only skin-deep. Perhaps that fits here.

KidneyCouch is an online library for kidney cancer patients and/or patients with chronic kidney disease. KidneyCouch provides links to credible sources, stories, and educational material for patients and family members. KidneyCouch © Copyright STRENGTH in UNITY At KidneyCouch, we are dedicated to providing a supportive and informative space for kidney cancer patients and those who are also dealing with chronic kidney disease (CKD). Access valuable resources, stories, and articles that can make a difference in your journey. Quick Links KidneyCouch Podcast About the Couch Resource Library The Patient Journey Testing & Diagnosis Treatment Options Surveillance Emotional Support Journey Diagram PURPOSE KidneyCouch is committed to offering support and information to individuals battling kidney cancer and/or chronic kidney disease (CKD). Our goal is to create a community that fosters connection, understanding, and empowerment for patients and their loved ones. Through resource links, stories, and articles, we aim to provide helpful insights and education so that you are better informed in discussing your kidney cancer and chronic kidney disease with your physician. Always consult your physician before making any medical decisions. Friends Around the Couch KidneyCouch gives recognition and appreciation to the following organizations and their efforts to address kidney cancer and chronic kidney disease. Urology Care Foundation Kidney Cancer Association National Kidney Foundation American Cancer Society Imerman Angels The Patient Story Smart Patients Cancer Interviews INSPIRING STORIES Read Now 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.

PRESS RELEASES 1 / Partnership Announcement with Smart Patients February 13, 2026 FOR IMMEDIATE RELEASE: KidneyCouch Supports Patients and their Families with an Online Kidney Cancer Community KidneyCouch partners with Smart Patients to create a new online kidney cancer community that will make it easier for patients and families to support and learn from one another. ROCHESTER, MN, February 13, 2026: Today, KidneyCouch is proud to announce a new partnership with Smart Patients, an online peer-to-peer support forum for patients and their families, which allows KidneyCouch to extend its ability to help those impacted by kidney cancer by adding virtual social and emotional support to their outreach programs. Patients and families affected by kidney cancer can join the Smart Patients kidney cancer or chronic kidney disease community for free to share, interact, and learn from each other in a safe, supportive environment. Patients are invited to join the kidney cancer community through the following link: KidneyCouch Smart Patients Community. Individuals can join the community by securely sharing their email addresses and setting up a free personal account. Once the account is confirmed participants will have access to information, and resources, and be able to participate in community conversations on topics of interest. About KidneyCouch KidneyCouch is dedicated to providing a supportive and informative space for kidney cancer patients and those who are also dealing with chronic kidney disease (CKD). It provides resources, stories, and articles to its community members. About Smart Patients: Smart Patients is an online community where patients and caregivers affected by serious illnesses learn from each other. Members share personal experiences, ask and answer questions, and gain knowledge in an ad-free, private space that helps them make better-informed decisions about their care. The platform hosts more than 100 disease-specific communities and is free to join. Learn more at KidneyCouch Smart Patients Community. Contact: Kristi Lynden kristi@smartpatients.com Smart Patient Social Media Handles: Facebook (@smartpatientscommunity) Instagram and Threads (@smart_patients_community) LinkedIn (@Smart Patients) Bluesky (@smartpatients.bsky.social) 2 / Affiliate Partnership Announcement with the Kidney Cancer Association October 20, 2025 KCA Welcomes New Affiliate Partner KidneyCouch Kidney Cancer Association The Kidney Cancer Association (KCA) welcomes KidneyCouch as a new Affiliate Partner. KidneyCouch is committed to offering support and information to individuals battling kidney cancer and/or chronic kidney disease (CKD) with a goal to create a community that fosters connection, understanding, and empowerment for patients and their loved ones. Founder Jeff Kallis, 64, was diagnosed with stage 3 clear cell renal cell carcinoma (RCC) in 2023 and has since written a book about his journey, has been featured in multiple news stories, and created KidneyCouch to increase awareness, education, and support for patients and family members dealing with kidney cancer and chronic kidney disease. His personal mission has always been to connect with and support fellow patients so that no one has to walk this journey alone. For more information about Kallis’s full story, visit KidneyCouch – About. Jeff Kallis’ kidney cancer prompted questions. He wanted to help others find answers. “KidneyCouch is proud to create this affiliation with the Kidney Cancer Association,” Kallis said. “There is strength in unity and there is no better partner than the KCA in creating awareness, education, and finding a cure for kidney cancer.” “It’s gratifying to see how Jeff has used his personal experience to create a welcoming space for meaningful connection,” said Gretchen E. Vaughan, KCA’s President and CEO. “With our shared values, we are looking forward to working together!” The KCA’s Affiliate Partners help expand the support available for people impacted by kidney cancer and allows for strategic collaborations that will advance research, advocacy, and education. KidneyCouch joins seven existing KCA Affiliate Partner organizations: the Chris “CJ” Johnson Foundation, the Chromophobe and Oncocytic Tumor Alliance, HLRCC Foundation, Elevate Childhood Research and Advocacy, Joey’s Wings Foundation, the Judy Nicholson Kidney Cancer Foundation, and the Wilms Cancer Foundation. Media Contact: Radha Chitale Senior Director of Communications 847.332.1051 ext. 113 | rchitale@www.kidneycancer.org 3 / Partnership Announcement with Imerman Angels August 15, 2025 KidneyCouch is pleased to announce that it has formed a partnership with Imerman Angels. Imerman Angels matches a cancer patient with another cancer patient with similar stories and experiences. In addition to the support I received from my wife Cindy, our sons, family, and friends, it would have been very helpful to have a personal connection with someone who had the same diagnosis and story as mine. There are people out there who want to be available to help others navigate their cancer journey – relating to you on a level that others cannot. Now, I want to “give back” to other people diagnosed with kidney cancer and need some emotional / social support as they ride this roller coaster. In July, I became a certified Imerman Angels Mentor Angel to do just that. No one needs to navigate the unknowns alone. Imerman Angles intentionally matches cancer patients according to age, gender, type of cancer, and experience; so, you know you are talking to someone who truly understands what you’re going through, in a supportive and caring connection. Imerman Angels provides this connection free of charge to anyone seeking support, connection and community. If you know of anyone who is dealing with cancer and would like or benefit from a one-on-one connection, please reach out to Imerman Angels at https://imermanangels.org/. If you are cancer survivor and would like to become a Mentor Angel, reach out to Imerman Angels at https://imermanangels.org/give-support/. To learn more about Imerman Angels, visit these links: KidneyCouch / Imerman Angels Partnership: https://www.kidneycouch.com/imermanangels Imerman Angels Resource / Partner Page: https://imermanangels.org/resources/ Imerman Angels – Home Page https://imermanangels.org/

Partners and Affiliates of the KidneyCouch.com. Affiliates and Partners KidneyCouch is proud to partner with organizations who's mission is to bring awareness, education, support, and resources to patients, friends and family members, and caregivers that experience kidney cancer journeys. Everyone has a story to tell. A unique, personal experience that we want to bring an additional voice to. The affiliations that we have forged share the mission of KidneyCouch to bring support and healing - medically and emotionally - through education and awareness for patients experiencing kidney cancer personally or within their circle of friends and family. We are pleased that the following organizations have joined us around the Couch to advance this mission. Kidney Cancer Association The KCA promotes scientific advances through two annual research symposiums and a robust grant program, participates in legislative advocacy, and seeks to be a source of education and resources for patients, caregivers, and anyone impacted by kidney cancer. KCA's vision is to be the universal leader in finding the cure for kidney cancer. Their mission is to be a global community dedicated to serving and empowering patients and caregivers, and leading change through advocacy, research, and education. Imerman Angels Imerman Angel's mission is to provide comfort and understanding for all cancer fighters, survivors, previvors and caregivers through a personalized, one-on-one connection with someone who has been there. Imerman Angels envisions a world where cancer is not a solitary experience. Smart Patients Smart Patients is an online community for patients and families affected by a variety of illnesses. Here you can learn at your own level about scientific developments related to your condition, share your questions and concerns with other members, and use what you learn in the context of your own life. We believe patients are the most underutilized resource in healthcare. We’ve watched patients become experts in their conditions — and we see that their knowledge improves the care they receive. With the right tools, you and other patients can do the same. Future Partners KidneyCouch is reaching out to other like-minded organizations to form affiliations with. Reach out if interested!