KCCure Blog

Kidney Cancer Awareness – Our Voice!

This month, we have had the opportunity to share some remarkable RCC survivor stories revealing the depth and breadth of the patient experience. We are grateful to all of the patients and caregivers who participated in this effort. Your stories provide a rich and honest narrative of the patient experience, reminding us that kidney cancer is not one disease and that experiences vary for so many reasons. Global Voice: Our patient communities comprise a worldwide population representing over 30 countries spanning five continents. This month we shared stories from six different countries, including the United States, Australia, Canada, Germany, Italy and Denmark. Rare Subtypes: We heard from patients with papillary RCC, chromophobe RCC, and even a super-rare case where classification has been ...

Voice of Kidney Cancer – Eric Smith

My kidney cancer was found shortly after I saw blood in my urine in December of 2010. Like everyone else who gets a cancer diagnosis, I experienced the sickening anxiety of being informed I had a suspicious mass.  In my case, I was told over the phone by a urology PA that the ultrasound had detected a “large mass” in my right kidney that was probably malignant. A radical nephrectomy (laparoscopic) followed. The tumor, about 9 cm but contained within the kidney, was identified as being clear cell renal cell carcinoma (CCRCC), stage 2. Annual CT scans proceeded along without incident for several years. Though I would have the natural anxiety when getting scan results, I had moved on from cancer psychologically and imagined a life without it. About four and a half years after my nephrect...

Voice of Kidney Cancer – Catherine Yutmeyer

My name is Catherine Yutmeyer. I am 39 years old and live in Central Illinois with my husband and 7 year old son. I have practiced family medicine as a PA for 14 years. I never expected to be a patient myself, and especially not to be the youngest cancer patient in my practice.  My cancer journey started in March of 2020. I felt great and had no symptoms. I was standing in front of the mirror one night with my hand on my side when I felt it. I still get goosebumps thinking about it because I knew in that moment that I was in trouble. I had a 9.5 cm tumor on my left kidney. I underwent a radical nephrectomy the following week. My colleagues were all thrilled to tell me after my surgery that I had Chromophobe RCC, feeling it was the best possible diagnosis. They all felt I was cured and...

Voice of Kidney Cancer – Dez Burton

In December 2017 I got diverticulitis for the first time in my life. My gastro doc sent me for a CT scan to see extent of the problem. He called me a few days later to tell me that I had a 5.7cm tumor in my right kidney and told me to see my urologist as soon as possible.  I saw my urologist in early January 2018 and he confirmed from the scan that it looked like clear cell renal cell carcinoma (CCRCC), recommended I have a partial nephrectomy and referred me to an oncologist/surgeon at MD Anderson. I saw the oncologist in late January 2018 and initially he agreed that a partial nephrectomy was recommended, then sent me for a biopsy to confirm the CCRCC.  After the biopsy I got a call from the oncologist’s PA saying that the doc now recommended cryoablation and set me up with an...

Voice of Kidney Cancer – Evelyn Gebele-Baker

In January 2017, my husband Rob went to our doctor thinking he had a hernia. She told him that he had indeed a hernia but also a huge growth on his kidney and did a blood test. She called us at 11.30 pm to tell him to go to the hospital right away. She could not understand how he was walking, his hemoglobin was so low.  There we found out he had a 21 cm tumour on his kidney. He was referred to an amazing surgeon and the surgery took place in March 2017. He had numerous blood transfusions before. After surgery he recovered well and was great for a full year.  In January 2018 he started seeing pinwheels but did not think anything of it as we just had scans, no MRI for the brain, but clear scans. A few weeks later he woke up with a headache so bad that he was in tears and not being ...

Voice of Kidney Cancer – Larry Garza

In May of 2016 I coughed up blood multiple times. My doctor recommended I go see him to avoid expensive emergency room costs since it sounded like a sinus infection. The next day I went it and alas, I had a sinus infection. For precautionary purposes he ordered a chest scan to rule out any other issues and ease my anxiety. After my scans results came in they found a 5cm mass in my right lung. Being a social smoker I immediately threw out the pack of cigarettes in my pocket as well as apathy towards smoking. They were concerned with what appeared to be a mass in my abdomen but needed to order an abdomen/pelvis scan and another chest scan this time with contrast. When those results came in it turned out that I had a 7cm mass on my right kidney. Transitioning to an oncologist with Texas Oncol...

Voice of Kidney Cancer – Carie Gort

August 6, 2019: I was experiencing: A cough I couldn’t shake. Unexplained weight loss. Terrible night sweats. Fatigue. Exhaustion. (Slept from after dinner until morning on weekdays, and all weekend long). and Digestive discomfort.  I KNEW something was not right. Everyone kept saying it was menopause.  My PCP ordered a chest x-ray and blood work.The chest x-ray showed four small nodules in my lungs. They told me not to worry – that everyone has them. But as a precaution, a CT was recommended.  August 8, 2019: I was sitting at my desk at work when the results came in. I opened up the Myhealth app and there it was, the diagnosis that changed my life. “Lung nodules likely metastasis from renal cell carcinoma”.  I’m sorry, what? A. What is renal cell carcinoma? B. Did I a...

Voice of Kidney Cancer – Robert Grizzell

I was diagnosed with kidney cancer 12/4/07. I had passed out at a Providence Medical Center fundraiser with a room full of doctors. An ultrasound was ordered which showed an enlarged right kidney. This was followed up with a CT Scan which showed an eight cm tumor in the right kidney and several small tumors in my lungs.  I had my right kidney removed right after Christmas. As luck would have it they had just approved Sutent in 2006 which changed the diagnosis from 3 to 6 months to 1 to 1 and half years. The city I live in only has one cancer center which had 5 kidney cancer cases in January of 2008. I went looking for a Kidney Cancer specialist and found Dr. Figlan at Cedars-Sinai. As others have noted, finding a person that only sees kidney cancer or specializes in kidney cancer is i...

Voice of Kidney Cancer – Doug Barrick

I was finally diagnosed in 2017 after a couple of years complaining to my Veteran Affairs (VA) doctor that I didn’t feel right. I finally had to leave the VA and go to a private group. They thought I had a kidney stone again. They did a CT and saw a cyst on my kidney.  The “cyst” was there from a scan years earlier but the doctor wanted an MRI. I almost didn’t go, but my girlfriend (who is now my wife) urged me to go as I had complained that nobody was listening to me and now someone is finally doing something. So I went that Saturday morning. Monday afternoon while driving home from work I got a call from the doctor : “the good news is you don’t have a kidney stone, the bad news is I’m 99.9% sure you have cancer, now before you ask me questions save them...

Voice of Kidney Cancer – Chuck’s Story

My journey started in June 2019. I was 47 at the time, turning 48 in September. I went out for a run with my wife and came back and urinated what looked like pasta sauce! Needless to say, after a bladder scope and CT scan it was determined that I had a 10 cm x 8 cm x 9 cm mass on my left kidney. Scans also showed a horseshoe kidney as a complicating factor.  There were nodules on my lungs at this time but they were very small and we were just going to monitor those. I had a radical laparoscopic nephrectomy to remove the left kidney as well as several lymph nodes in August 2019.  At the end of September my stomach was still extremely swollen and I was diagnosed with chylous asciites. They inserted a drain in my abdomen and removed 5 L of fluid. I went on a special diet for another few month...

Voice of Kidney Cancer – Jesse Jacobus

On March 2, 2020, I went to the emergency room with what I was pretty sure was appendicitis. A CT scan confirmed the appendicitis but the docs also informed me that I had a 7.7 cm mass on my left kidney. Renal Cell Carcinoma (RCC).  I had a radical nephrectomy of my left kidney on March 22 (after sweating out whether COVID restrictions were going to cancel my surgery).  Post surgery, my urologist assured me that I was “cured,” that the tumor was fully encapsulated and had clear margins, and CT scans did not show any cancer anywhere else. Three months later, chest X rays were “suspicious for metastatic disease.” More CT scans confirmed 5 mets in my lungs (bilaterally) 1.7 cm or smaller, plus a 3.3 cm met in my mediastinal lymph node. Stage 4 RCC. The first radiological...

Voice of Kidney Cancer – Brian Rini

Brian Rini, MD is a professor of medicine and chief of clinical trials at Vanderbilt-Ingram Cancer Center (VICC) in Nashville, TN. He is a key opinion leader in the clinical investigation and management of kidney cancer. In honor of Kidney Cancer Awareness Month, Dr. Rini shared some of his views on where the field is today and what we have to look forward to in the future. KCCure: What is the most significant advancement you have seen in the last decade for the treatment of advanced RCC? Dr. Rini: The most significant advancement has been the development of Immunotherapy (IO) based doublets as front-line standard therapy in metastatic RCC (mRCC). These have led to significant overall survival advantages over sunitinib (Sutent), prolongation of progression-free survival/disease control and...

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