KCCure

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 ...

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...

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,...

KCCure wishes to thank everyone in the kidney cancer community for sharing their voices in March for Kidney Cancer Awareness Month. We received more stories than there are days in March!!  If you sent us a story and it has not been published yet, we have it saved for publication at a later date. Why do we publish stories? Each story is a reminder that no one is alone in the fight against kidney cancer.  Stories also help showcase the strong kidney cancer community that exists between patients, caregivers, providers, researchers — a community dedicated to fighting this disease together.  This month, we shared stories from people dealing with localized disease, metastatic disease and from loved ones dealing with loss. Ted shared his story of participating in a clinical trial – an...

My husband Aaron was diagnosed with stage 4 kidney cancer in February of 2018. A cough that just wouldn’t go away led to a chest x-ray that showed nodules in his lungs. The doctors ordered a CT scan that revealed a mass on his kidney.    I’ll never forget that life-changing phone call when Aaron called to tell me that the doctors suspected cancer. I took an emergency flight from Cleveland to be with him at the appointment.  The team in Grand Rapids recommended that Aaron start Cabometyx, which worked to shrink his tumors for the first scan.  But at the next scan, the doctor suggested switching to the combination of Opdivo and Yervoy.  Aaron breezed right through the first three infusions but by the fourth he was beginning to not feel well. He was very tired, not eating much, vo...

What’s the right thing to say to a kidney cancer patient? It’s not always easy to know. Larry Inman shares his advice. Diagnosed with kidney cancer in June of 2017, I had surgery to remove it in August.  I thought I had a clean slate, but was diagnosed with metastatic cancer in December of that year.  I am blessed beyond merit by the support system I enjoy and am certain I would not get through this without them.  Several friends have expressed uncertainty about what they could/should say as I travel this path, wanting to know what is going on, but not burden me.  They want to encourage but not offend me, and I love them for that concern.  None of us has a playbook on dealing with these matters, so there is no right or wrong answer.  For me personally, here is how I would respo...

Dave shares his story of being diagnosed with stage 4 Translocation Renal Cell Carcinoma, a rare form of kidney cancer.  My Cancer Journey… In March, I will be celebrating – If that’s what you want to call it – my 2 year anniversary of fighting cancer. Two years ago, I was 39 years old, and literally in the best shape of my life. I worked out 5-6 days a week, ate healthy (most of the time – LOL), and didn’t have any health issues. In fact, the only medications I took were multivitamins and the usual over the counter stuff if I had a headache, heartburn, etc. Aside from that, I have 2 wonderful kids (Alivia 9, and Logan 11), and a great wife – the love of my life – Michelle. I really did feel like I was on top of the world. I had a great job that I loved, and I made a ton ...

My kidney cancer story began early in 2017 when I started feeling tired, lost my appetite and lost weight. In April, the PCP ordered blood tests that included BUN/Creatinine/Lytes and my first PSA test. My Creatinine was at the upper limit and the PSA was high so I was immediately referred to Urology.  An ultrasound in May indicated an enlarged prostate so I was concerned about prostate cancer until a biopsy was completed in late July that came back negative for cancer, but required medication to reduce prostate growth. In October 2017, I had abdominal pain that continued to worsen into 2018. Results from a CT Scan provided a PCP on February 21st, 2018 indicated a left renal lesion and I was told to follow-up with a Urologist. On February 27th, 2018 I met with the urologist as I complained...