How and why KidneyCouch was created and founded by Jeff Kallis, kidney cancer patient and survivor. My Story I published a book about my experience with kidney cancer and chronic kidney disease. Check it out on Amazon 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. It is a daunting task. Having cancer is a new playing field. One that no one trains for. And the goal posts move often, many times farther away. Very few locations around the world offer in-person cancer support groups. Having a coalition of resources at your fingertips - the keyboard and phone - is the next best way to provide that support. Moving the goal posts closer together. 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 KidneyCouch Overview - Video 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.

Navigate your kidney cancer journey with stage-specific guidance and resources tailored to your needs. Top of Page Stage 4 Recurrent Stage 1 & 2 Stage 3 Common Journeys for Patients with ccRCC According to the Cancer Research Institute, 90 percent of kidney cancers are renal cell carcinoma (RCC). Of these, 70 percent have the subtype of "clear cell" renal cell carcinoma (ccRCC). Staging is a way to describe the cancer in terms of location and how far it has spread. It helps physicians determine the best course of treatment for the patient. The typical journey for each of the 4 stages ( I - IV ) is outlined below. 1 2 3 4 Information from the American Cancer Society, 2024, edited. Stage I and II cancers are confined to the kidney. Stage I is the least aggressive stage and has the highest five-year survival rate. Stage II is more serious than Stage I but still confined to the kidney. Active surveillance Some small (Stage I) cancers might not need to be treated right away. Small tumors often grow slowly, and some might never cause serious problems. Active surveillance might be an option for some people with small kidney tumors. The tumor is monitored closely with regular imaging tests (CT scans or MRI) and other tests. Further treatment may be necessary if the tumor grows or starts to show other concerning signs. Surgery If treatment is needed, the kidney cancer is usually removed with surgery when possible. Partial nephrectomy (removing the part of the kidney containing the cancer) is often the treatment of choice for smaller tumors. This is especially true for people who have reduced kidney function (or who might have it in the future). Radical nephrectomy (removing the entire kidney) is often favored if the tumor is larger, if it’s in the central part of the kidney, or if there’s more than one tumor in the kidney. Some lymph nodes near the kidney are often removed as well. More lymph nodes might need to be removed if any of them look enlarged on imaging tests, or if there’s a higher risk that the cancer might spread to the nodes. Most often, no further treatment is needed after surgery. If, after surgery, the cancer cells are found to have troubling features when evaluated in the lab (such as being very high grade), one option might be to get adjuvant (additional) treatment to help lower the risk of the cancer coming back. Other treatment options For people who aren’t healthy enough to have surgery or who don't want surgery, other local treatments such as cryotherapy or radiofrequency ablation (RFA) can sometimes be used to destroy (ablate) the kidney tumor. Radiation therapy (particularly stereotactic body radiation therapy, or SBRT) may be another option. Although these types of treatments can have outcomes similar to surgery as far as the chances of the cancer spreading to other parts of the body, some studies show the cancer might be more likely to come back in the same area. 1 and 2 Stage 1 & 2 Stage 3 3 Stage III kidney cancers have grown into nearby large veins or tissues around the kidney, and/or they have spread to nearby lymph nodes. Surgery Surgery is typically the treatment for Stage III. Most often, this is a radical nephrectomy, in which the entire kidney is removed. A partial nephrectomy (removing the part of the kidney containing the tumor) might also be an option if it’s possible, especially in people with reduced kidney function or who have tumors in both kidneys. Some lymph nodes near the kidney are often removed as well. More lymph nodes might need to be removed if any of them look enlarged on imaging tests , or if there’s a higher risk that the cancer might spread to the nodes. If the cancer has grown into the inferior vena cava (the large vein that brings blood from the lower part of the body back up to the heart), your surgeon may need to cut open this vein to remove all of the cancer. For clear cell RCC, an option after surgery is to get adjuvant (additional) treatment to help lower the risk of the cancer coming back (recurrence). Other treatment options For people who can’t have surgery for some reason, radiation therapy or ano ther type of local treatment might be options. Some stage III cancers can’t be removed completely by surgery or destroyed with other treatments. These cancers might get the same treatment as stage IV cancers, with t argeted therapy drugs, immunotherapy , or a combination of these. Stage 4 4 With Stage IV kidney cancer, the main tumor has grown outside the kidney, or the cancer has spread to other parts of the body such as distant lymph nodes or other organs. Treatment of Stage IV kidney cancer depends mainly on how extensive the cancer is and on a person’s general health. For most people with Stage IV kidney cancer, medicines such as immunotherapy and targeted drugs are the main treatments (see below). But in some cases, surgery may still be a part of treatment. While it’s not common, sometimes the main tumor appears to be removable and there is only limited spread to another area (such as to one or a few spots in the lungs). In these situations, surgery to remove both the kidney and the metastasis (the outside area of cancer spread) may be an option if a person is in good enough health. Other options to treat the metastatic tumors might include ablative treatments or radiation therapy . If all of the tumors are removed (or destroyed), additional (adjuvant) treatment with the immunotherapy drug(s) might be considered. If the kidney tumor can be removed but the cancer has spread extensively elsewhere, treatment options might include: Removing kidney with the tumor first. This type of surgery (known as a cytoreductive nephrectomy) isn’t recommended for most people, but it might be an option for otherwise healthy people in a low-risk group . Surgery is then followed by drug treatments for most people. Giving drug treatments (immunotherapy and/or targeted drugs) first. This is likely to be preferred for most people, even if it looks like the cancer in the kidney can be removed. For some people, if the cancer shrinks a lot with this treatment, surgery, ablative treatments , or radiation therapy might be options to try to remove or destroy any remaining tumors. If the kidney tumor isn’t removable If the kidney tumor can’t be removed, the first treatment is usually with medicines such as immunotherapy and/or targeted therapy drugs. Often, one of each type of drug is part of the first treatment. Which ones are used depends to some extent on if the cancer is a clear cell RCC or a non-clear cell RCC. If one treatment doesn’t work (or stops working), another one can often be tried. For some less common types of non-clear cell RCC, such as collecting duct RCC or renal medullary carcinoma, chemotherapy is often the first treatment. While it’s not common, sometimes the first treatment might shrink the tumors enough so that surgery , ablative treatments , or radiation , might be options to try to get rid of any remaining tumors. In other situations, surgery or other treatments might be used to help relieve symptoms from the cancer, such as pain or bleeding, rather than trying to get rid of the cancer completely. This type of treatment is called palliative therapy. If you have advanced kidney cancer (stage IV) and your doctor suggests surgery, ablation, or radiation, be sure you understand what the goal of the treatment is. No matter what type of treatment you’re getting, having your pain controlled can help you maintain your quality of life. Treating the cancer itself can often help with this. Medicines to relieve pain can also be helpful, and they will not interfere with your other treatments. Controlling any pain you have can often help you be more active and continue your daily activities. Because advanced kidney cancer is very hard to cure, clinical trials of new combinations of targeted therapy drugs, immunotherapy, or other new treatments are also options. Treating Recurrent Kidney Cancer Cancer is called recurrent when it comes back after treatment. Recurrence can be local (near the area of the original tumor), or it may be in distant parts of the body. Treatment of kidney cancer that comes back (recurs) after initial treatment depends on where it recurs and what treatments have been used, as well as a person’s health and wishes for further treatment. Local recurrence For cancers that recur near the area of the original kidney tumor after surgery, further surgery, other localized treatments, or radiation might be options. Even if not all of the cancer can be removed or destroyed, these treatments might still help relieve symptoms in some people. Other treatment options will most likely include immunotherapy and/or targeted therapy drugs. Clinical trials of new treatments are an option as well. Distant recurrence Kidney cancer that recurs in distant parts of the body is treated like stage IV cancer (see above). Your options will depend on where the cancer is; if it’s thought to be removable or not; which, if any, drugs you received as part of your first treatment (and how long ago you got them); and on your overall health and preferences. For cancers that continue to grow or spread during treatment with immunotherapy or targeted therapy drugs, different drugs still might be helpful. Recurrent cancers can sometimes be hard to treat, so you might also want to ask your doctor about clinical trials. For some people with recurrent kidney cancer, palliative treatments may be the best option. These treatments are intended to help control the cancer and relieve any symptoms it is causing. Options might include radiation therapy, ablative treatments, or even some type of surgery, if a person is healthy enough. Controlling symptoms such as pain is also an important part of treatment at any stage of the disease. Recurrent

Join the 'Orange Up' movement to raise awareness and support for kidney cancer and CKD patients worldwide. 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 81K Challenge Plummer Building The Plummer Building, Mayo Clinic, Rochester, Minnesota, lit up in orange in March every year. 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

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