Patient Stories

I was diagnosed on September 13, 2019 with stage 4 renal cell carcinoma (RCC). When they found it, the kidney mass was over 12 cm. Surgery wasn’t recommended because the tumor had spread to the duodenum and other areas in the abdomen. Internal bleeding had caused my hemoglobin to drop to 5.0, which made me almost pass out – which is what sent me to the emergency room in the first place. I would end up getting 9 units of blood over 2 weeks.  My doctor, Dr. Monty Pal at City of Hope, suggested that we start treatment with Opdivo + Yervoy, a combination of two different types of immunotherapy. After three infusions of both drugs, the tumor had shrunk to 5.2 cm. After three more infusions of just Opdivo, my latest scans show that the tumor is just 3.2 cm, with minimal...

It’s weird how I used to take the small things in life for granted. Like ice fishing. I was on the ice starting at seven, maybe eight years old. My three boys are the same way.  Now they are men. Two of them have moved out of the small town we live in. Having the middle boy drive four hours just to fish with me, his dad, makes me feel like I took a lot of in my life for granted and the way I did things in my past were wrong. Cancer made me change for the better. I still hate cancer but it gave me more time to think about the small stuff. Stay strong and positive my friends. Scott is a stage 3 kidney cancer survivor. In December, he reached a milestone, six months cancer free.

My journey with clear cell renal cell carcinoma (ccRCC) started on February 2, 2017. I had foot surgery on November 30, 2016. During a follow-up exam from this procedure, my physician palpated my abdomen and he told me I had an enlarged liver.  I had an ultrasound to investigate, which showed a 9.5 cm mass on my right kidney.  I had a right radical nephrectomy on April 3rd. Then a left adrenalectomy on November 2, 2017.  Following surgery, I was put on surveillance. Moving forward, my 3-month scan in February 2018 showed a spread of ccRCC to my iliac crest.  It was treated with 15 rounds of radiation therapy and then I started Sutent. Then Valentine’s Day 2019 I had my gall bladder removed. It was filled with gangrene and had ripped apart. My September 2019 scans found a spread of ccRCC on...

My father was diagnosed with kidney cancer in September 2017. He had a radical nephrectomy, removing his left kidney. His six-month check up scans showed that cancer had spread to his lungs and brain. My father died a little over a year after his diagnosis and just a few months before I was diagnosed with the same disease. I was diagnosed with kidney cancer in October 2018. That same month I had a right radical nephrectomy. My urologist said my cancer mass was about ten pounds. He said it was the largest mass he had seen in over ten years. Knowing what my father’s experience was I decided to get in to see an oncologist shortly after my surgery. Three months after my surgery, a CT scan showed that the cancer had spread to my lungs, abdomen, ribs, and adrenal gland. I started taking Su...

In May of 2018, I developed left lower back pain that lasted 3 days. The pain was so severe that when I would take a deep breath, it would just grip me. I assumed it was a kidney stone and went in for a CAT scan. Instead of a kidney stone, the scan showed a mass measuring 2.5 cm on my left kidney. The radiologist thought it was possibly a cyst that had ruptured and suggested an ultrasound to better characterize it. It is often said that doctors make the worst patients and I am no different. Once I heard the word cyst and the pain subsided, I dragged my feet. I got back to my normal routine and lived in ignorant bliss, until I had a dream two months later. In that dream, I was watching a TV awards show and Hollywood celebrities were on the red carpet being interviewed. The interviewer looke...

It is just past 2 a.m. I am sitting in the hospital listening to Steve snore. A bit over 20 years listening to it every night. But right now to me it is just the best sound in the world. Wednesday morning was his nephrectomy. To remove the kidney, open heart surgery, and then I can’t remember the name of the tube from the kidney to the heart but that was filled with tumor as well! There was so much that could go wrong in this 10 hour surgery.   But here we are and I am listening to the most amazing sound in the world. When they wheeled him away I did not know if I would ever get to hear it again. My heart is so happy right now. He was told 7-10 days to recover in the hospital. He looked at me a couple weeks ago and told me it would only take 7 days as he is tough. Well he was ri...

I found out I had stage 4 renal cell carcinoma (RCC) days after my husband died of esophageal cancer. I never felt so alone in my life. I read the results of a chest x-ray that I had gotten on my six month check-up. Neoplastic abnormalities, including changes associated with metastatic disease. The silence made it hard to breathe. I buried my husband and went the next day for a CT. I didn’t turn the lights off for days. I was afraid to close my eyes. I didn’t care if I lived or died. I just needed to live long enough to see my mom through her journey with uterine cancer. I agreed to participate in an RCC clinical trial two weeks after my nephrectomy. I didn’t even know what the trial was accomplishing. I didn’t know about the medicines or anything. It was too s...

My name is Scott Johnson. I was a reasonably healthy 58-year-old male until early 2019.  I started feeling fatigued and confused and made an appointment with my GP.  Eventually, he sent me to a hematologist, who ordered an abdominal ultrasound.  In the meantime, I’d had hematuria, and had been to the emergency room, where I was referred to a urologist.   I am a terrible patient. I have a difficult time describing my pain, or symptoms…  I forget to tell doctors information… and I edit what I say, because I don’t think it’s relevant.   I appreciated the way my GP stuck with me when my only complaints were fatigue and confusion…  I felt like I didn’t give him much to go on. And I’m grateful to my hematolog...

It is sad when we lose fellow warriors diagnosed with metastatic RCC. I thought I would share my story to offer some encouragement. Nine years ago today I lost my left kidney to Stage 3 RCC. My tumor was the size of a small pumpkin! After surgery, I enrolled in a clinical trial for adjuvant Votrient. I was devastated when I got the diagnosis of metastatic RCC to my lungs two years later. After an unsuccessful lung surgery my wonderful oncologist Dr. Motzer at Memorial Sloan Kettering in NY put me in a clinical trial for immunotherapy with Opdivo and Yervoy. I was only able to tolerate four infusions before I had to drop out of the trial, as my immune system started attacking my healthy organs. I was in ICU for weeks, in liver failure, and became a type 1 diabetic because my pancreas a...

In 2009, at the age of 40, my husband Chris, went to the emergency room for what we thought was appendicitis, only to have a CT scan reveal a massive tumor on his kidney.   The next few days were a blur. Chris was just propelled forward like a car on an assembly line – we weren’t so much consulted, just politely informed of what was coming next. Four days later, following a radical nephrectomy, the surgeon pronounced my husband “cured.” “We got it all!” “No need to worry!” “Get on with your lives!” Our friends and family – the support network that we looked to most for comfort and security – echoed what the doctor was saying. “Just move on.” But we couldn’t “move on.” If he was cured, why did we need to get scans later on? What was this thing called “recurrence” that we kep...