Patient Stories

I am feeling thankful that today my husband went out with his dad (we are neighbors) and caught a bunch of bass and some crappies. He was really happy when he got back. After dinner he said that since his cancer diagnosis, he felt stress-free for the first time while out fishing. My heart was filled with joy and sadness all at once. I just want to buy this man a boat or take his place in this journey. I want him to feel like himself again. Last spring, he was healing from a radical nephrectomy only to dive right into full blown stage 4 translocation renal cell carcinoma a couple months later.  In May we were treating brain mets, learning to re control the right side of his body in July. And beginning immunotherapy in June. In August he had a rod and pins placed in his right arm. He di...

It’s interesting and bonding to read about similar and difficult experiences we are all having during this pandemic. But the hardest thing for me right now is my own mindset. I guess I didn’t come into the pandemic with great reserves of strength. Last July, we moved three to four hours away from our older son and his daughters, who are now in college, as well as our own daughter, in order to be here and watch our younger son’s two little girls grow up.  I still think it was a good thing to do. But moving is hard, especially since it also took us further from our siblings who, like us, are getting older. I am missing people. Then came my cancer diagnosis in October. I don’t need to explain anyone who has gone through that how hard it was to hear those words. On Janu...

In 2006, I was recovering from unrelated surgery when I became ill. I went to the ER where a CT exam was ordered to see if I had torn internal sutures. It was during that exam when it was discovered that I had a 6CM mass on my left kidney. They call it incidental finding.  I was terrified. I was only 58 years old at the time. My own mother passed away from cancer. All I could think of is how she suffered towards the end of her disease.  My family surrounded me and we had a consult with a local urologist. He didn’t answer my questions. He didn’t treat me with compassion. Needless to say, we didn’t proceed with him. We opted to seek care at Roswell Park Cancer Institute in Buffalo. While there, I saw Dr Hyung Kim, a Urological Oncologist.  After consulting with Dr. Kim, it was...

Today was my 5 year diagnosis anniversary. Wow, what a journey… Considering they only gave me an 8% survival rate for stage 4 metastatic RCC. I’m not in the clear and never have been, but it’s been an amazing experience. I’ve traveled the world, and lived, laughed and loved like never before. Today was also my ct scan day coincidentally. I get results on Thursday.  These results will determine my future. You see, my immunotherapy trial stopped working after 3 1/2 years. I’ve been on Cabo since December, so if it’s not working, there will be nothing else they can do. As the biggest tumour I have is on my lung, right near my heart. It’s inoperable. But in saying that, I’m ready whatever the outcome. I’ve had an amazing life. Today when I ...

My cancer story started June 2nd, 2018. I was 47 years old at the time and a busy full-time working wife and mother of 4 children ages from 13-30 living in Minneapolis, Minnesota.  On May 29th, 2018, I went into my local Urgent Care as I had been struggling with a reoccurring bladder infection and some constipation. The urgent care physician ran the appropriate tests, and everything came back normal. She provided me with at home remedies to try and sent me on my way, with instructions to come back if I still wasn’t feeling well.   Later in the week, I was telling my husband that I just feel terrible and was debating if I should go back to the doctor. Just as I said that, my phone rang, and it was the urgent care physician I had seen earlier in the week, doing a follow up on my condition.  ...

I am 66 years young. I was incidentally diagnosed in the emergency room in Sept 2019 while getting an ultrasound for a shooting pain on my right side from under my arm to my waist. The doctor came in and said we don’t see anything that would cause this pain, possibly a pulled muscle, but we did find a 6.5 cm growth on your left kidney that you should get checked out. The urologist I chose was Dr. Chen at Fox Chase Cancer Center in Philadelphia. I met with him in October. Dr. Chen said he recommended a robotic partial, his only concern was the proximity of the growth to the collecting reservoir. We scheduled surgery for December 18th, as I had a golf tournament in November. Dr. Chen said it’s been in there a while so there was no rush. Waiting was really hard though. This was my first surge...

My name is Constance Robinson. I was diagnosed with chromophobe renal cell carcinoma (chRCC) in 2006 at the age of 30.  Unfortunately, I didn’t catch it fast enough to save my right kidney. I remember the symptoms starting with pain in my right side. I didn’t think anything of it at the time because I used to work out all the time. I thought I had pulled a muscle from my TaeBo exercise routine.  I remember another month going by and the pain was getting worse. Along with the pain began night sweats. As the days progressed, I felt as if I was coming down with the flu and just the feeling of not being well. I got up the next morning and went to urgent care where they ordered some bloodwork and an x-ray.  The x-ray came back with results of only gas and constipation, but my bloodwor...

Today’s Voice of Kidney Cancer is not one story, but many stories. We all are struggling with how our individual lives have changed in the wake of the COVID-19 pandemic. Schools have closed, travel bans are in place, the uncertainty is wreaking havoc on the world economy. Today we profile three families who are uniquely impacted by the outbreak due to immunosuppression. Mary’s husband Rick was diagnosed with an aggressive form of kidney cancer in 2018. Thankfully he was able to get great care from Dr. Chuck Drake at Columbia Cancer Center in New York. Enrolled in a promising clinical trial, Rick responded well to immunotherapy. But like many people who respond well to these treatments, Rick also suffered adverse events. As a result, he now needs to take steroids to suppress his immune syst...

In June 2017, I went to the hospital for a kidney stone and left with a diagnosis of stage 1 clear cell renal cell carcinoma. Two weeks later, I had a full nephrectomy and was told that because I was healthy, young, and had never had a health problem—not so much as a cholesterol number out of line—I’d likely never have to worry about kidney cancer ever again. Sadly, that nephrectomy was a beginning, not an end. On Dec. 27, 2017, a month shy of my first post-surgery follow up CT scan, the cancer had returned. I was declared metastatic, with a heavy tumor burden. An egg-sized tumor had grown in the spot where my kidney once was, along with three grape-sized spots on my liver and a handful of nodules on my diaphragm. Honestly, as much as I or my family didn’t want to admit it, my ...

“It’s a marathon, not a sprint…” Back in August of 2014, when my journey began, I was getting ready to turn 41 years old. I had just had my first annual physical since being a teenager and passed with no issues. A few days after that appointment, I started having dull stomach pains and thought it might be food related. As the pain persisted throughout the day, I began to suspect it might be an appendicitis. After being redirected from Urgent Care to the ER, I waited for a doctor to assess me and order a CT.   An hour or so later, the doctor confirmed my suspicions that I was having an appendicitis and that a surgeon had been called in. The next words that he uttered will forever be etched in my brain.   “There’s not an easy way to tell you this, but we fo...

Fifteen years later,  I am astonished at how my life has been impacted and changed by a kidney cancer diagnosis. In 2005, I was 45, with a husband and young daughter. After complaining about a hard lump on the left side of my body, I was diagnosed with a 13 cm mass on my kidney. I had a radical nephrectomy; pathology confirmed stage 2, clear cell renal cell carcinoma. There is actually a great prognosis overall for people with localized disease (cancer that hasn’t spread outside of the kidney). I showed no evidence of disease (NED) for 6 years until there were tumors found in my lungs which changed my prognosis of long term survival drastically. After my initial surgery, had I known about clinical trials, possibly I could have been a candidate but at the time it was like visiting a f...

I was diagnosed two years ago with a 12.5cm pt3a n1 unclassified renal cell carcinoma. I went to Memorial Sloan Kettering (MSKCC), where Dr. Russo performed my surgery and Dr. Motzer is my oncologist.  Going into the surgery, I wasn’t really that worried. But when the pathology came back, everything changed. Seeing the words unclassified RCC terrified me. I couldn’t think about anything other than wondering whether my cancer would come back.  The more I searched for information about my diagnosis, the more anxious I got. Having a rare subtype made me feel even more alone. I suggested to KCCure that they start a group for unclassified patients like me. Today, the group has grown to over 170 members.  It’s still a rare form of kidney cancer, but at least others know that they aren’t alone. T...