Patient Stories
Celebrating Kidney Cancer Caregivers – Zach Juno
Zach Juno shares his journey as a caregiver and fierce advocate for his mother, a stage 4 kidney cancer survivor. I’ll never forget hearing it. “Your mother has a tumor the size of a tennis ball on her left kidney” That was the day I became my Mother’s advocate and cancer caregiver. This was in March of 2006 and the landscape of kidney cancer was so different. We kept reading things like “Renal Cell Carcinoma doesn’t respond to chemotherapy.” I immediately started reading statistics on the disease and remember breaking down in my living room. My mother, who has always been the center of my world and only 58 years old at the time had cancer and I just wanted to save her. I think I was trying to save myself too. We were referred to a Urologist in the town she lives in. Our whole fami...
Barcelona
Six months before he died, my husband Chris watched a documentary about La Sagrada Familia, a basilica in Barcelona, Spain. He became fascinated with the project and told me how much he wanted to see it in person. Begun in 1882, La Sagrada Familia has been under construction for more than a century. When architect Antoni Gaudi first designed the project, he knew it would never be completed in his lifetime, and when he died, only a quarter of his vision was constructed. It’s estimated to be complete in 2026, and when it is done, it will be the tallest religious structure in Europe. I don’t know what it was about this building that fascinated Chris so much. Perhaps it was the grandiosity and magnitude of the effort. Perhaps it was the perseverance of so many to bring th...
Voice of Kidney Cancer – Mary Kammerer-Miskovsky
Our life changed forever when my husband Rick was diagnosed with Stage IV aggressive clear cell renal carcinoma on New Years Eve of 2018. In the beginning, all I knew was fear until I joined KCCure. The amazing support we have received is beyond anything I could ever have imagined. Because of KCCure we went for a second opinion and found an AMAZING RCC oncologist, Dr. Chuck Drake, at New York Presbyterian/Columbia University Medical Center. My husband is currently in a clinical trial and responding well. We have HOPE again. I want to help others realize there is HOPE. I want them to know there are many tomorrows left. Our Story is FAR from OVER and I want others in the same situation to know neither is there’s. Mary Kammerer-Miskovsky is a patient ambassador for KCCure. SheR...
Voice of Kidney Cancer – Chester’s Story
I was diagnosed with kidney cancer mid-April 2019. I was scared and had no answers. Having little experience with cancer, I basically thought I was dead and leaving my wife and 3-year-old all alone in the world. The first surgeon I met with told me they would need to do an open incision about 12-18 inches across my body. He told me it was the only option. They weren’t talking to me about my cancer diagnosis. They were just talking about how they were going to cut it out. I began seeking help through online support groups and forums. Initially, I was just looking to vent about my situation and have someone tell me I wasn’t going to die. That’s when I first heard from KCCure. After sharing my story in an online community, they sent me a dire...
Voice of Kidney Cancer – Christiane Waked
Change your perspective and make cancer a thriving experience to become your best self. In October 2006, I was sitting on a bench in Paris, crying my eyes out while it was pouring rain on me, as if the sky was feeling my pain and sobbing with me. Earlier that day, a man in a white blouse articulated a two-syllable word that every sensible person fears: “Cancer”, he said, “Death”, I thought. That year was a turning point in my life. I had just found out that my mother was going to start dialysis; she was diagnosed with polycystic kidney disease and her kidneys were failing. My instinctive decision was to donate my kidney so that I could save her from the burden of dialysis. Despite the fact that my mother who lived in Beirut, where I am originally from had rejected the idea of taking ...
Voice of Kidney Cancer – Carol’s Story
In April 2019 the Food and Drug Administration (FDA) approved Keytruda (pembrolizumab) in combination with Inlyta (axitinib) for the frontline treatment of patients with advanced renal cell carcinoma (RCC). We’re grateful to brave patients like Carol who participated in a clinical trial and helped make this treatment a reality for advanced RCC patients. I have been retired for more than 5 years. I have always been a person with a lot of energy. In fact, I used to teach 3rd grade in an all boys school. Energy needed there! In the fall of 2016, I began to have terrible night sweats, changing many times a night, and was just exhausted. I went to my primary doctor who knows I’m not a complainer. She could tell my lymph nodes were swollen and began doing tests. At first, lym...
Voice of Kidney Cancer – John Coulthard
Never give up! I was diagnosed April 2016 with bilateral stage 4 RCC at 63 years old. Zero symptoms so it was a bit of a surprise. Two surgeries – a full nephrectomy and a partial – by then one tumor was basketball sized, at Ochsner in New Orleans. Luckily I was able to retire and get full disability and went onto oral medication (Cabometyx). At this point I had not really realized that this is a manageable chronic disease and figured that I’d be dead in a year or two, so I traveled. Bought a small travel trailer and spent most of 2017 exploring the Rocky Mountains alone, hiking, fishing, camping, photographing and driving the back roads. I was born and raised in England so this opportunity to explore the American West was a dream come true– in fact , after spending...
Voice of Kidney Cancer – Caroline Sample
My kidney cancer journey was preceded by breast cancer, which was caught early through a routine mammogram. After two surgeries I returned to work in January 2010, the same month I celebrated my 60th birthday and my cancer-free status. We had learned much, including how to advocate for ourselves, ask for help and support and to celebrate every bit of good news. The thrill didn’t last long. One month after my return to work I felt dreadfully sick and vomited throughout the night. Strangely, over a period of several days, a beautiful ruby-red gem sometimes appeared in the toilet bowl. I realized later that this this was a blood clot. A visit to my PCP and a urine test showed evidence of hematuria, or blood in my urine, and an ultrasound rapidly followed. An appointment was made with a local ...
Voice of Kidney Cancer – Bryn Jones
Bryn is a member of KCCure’s Benign Renal Mass Community. He shares his story of being diagnosed with kidney cancer, only to learn following surgery that his masses were benign oncocytoma. Many patients struggle with anxiety and guilt after such an experience. KCCure is committed to supporting these patients and working to better identify gaps in care for newly diagnosed patients preparing for surgery. I am Bryn Jones a retired police officer in the UK. Born in 1963, I led a healthy lifestyle and am in general good health. In December 2008 I had an excision of a small lump/tumour (sarcoma) from my left shoulder. The procedure was carried out by a plastic surgeon, the rationale was that it was believed to be a lipoma. From 2009 when I was informed that the lump was in fact a sarcoma,...
Kidney Cancer Lessons – Laura Loughlin
I have stage 4 kidney cancer, clear cell Renal Cell Carcinoma. I was convinced most of my life I would never be a cancer patient. I can’t really explain why, just not something I ever worried about. My life, my normal, has changed completely since my diagnosis. Right now, I can tell you that in some ways my life is better than it was, more fulfilling. I appreciate it more. I have more time with family. I have pursued interests that were on the back burner and made some great new friends. I don’t know what the future will bring, and I don’t dwell on it. In the end no one knows the future, right? In the past three years, I think I have had many experiences common to cancer patients. I’ve learned so much about loss. Loss of health. Loss of control. Loss of employment. Loss of contact with so...