Patient Stories

Thank a Friend and Help Fund Research!

Below is a tweet from Adam Stern – physician, kidney cancer survivor, and now best selling author of Shrunk MD – a book of cartoons that he recently published. “I’m reaching out to anyone who has influenced me over the months since my own diagnosis and offering to send a copy to help raise money for @kcCURE.” When Adam came to us with the idea of selling his book as a fundraising effort for KCCure – I was thrilled and grateful. When he raised over $5,000 in a week for kidney cancer research – I was amazed. His tweet this morning reminded me about how crucial the kidney cancer community is – and how important it is to help connect patients with one another. “I’m reaching out to anyone who has influenced me over the months since my own di...

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. ...

Voice of Kidney Cancer – Rahson Taylor

Rahson is battling a rare form of kidney cancer called Hereditary Leiomyomatosis and Renal Cell Cancer or HLRCC.   HLRCC is a rare genetic condition that increases the risk of developing kidney cancer.  HLRCC is caused by mutations in a gene called fumarate hydratase (FH) gene. Rahson’s journey began after experiencing symptoms of nausea, significant lower back pain, and blood in his urine.  Initially, his doctors were confident that they could remove the tumor that was on his kidney but after further tests, they determined that the cancer was much more serious and that they couldn’t even perform the surgery at their location. He was then referred to another hospital where things really started to progress.  After a few indefinite diagnoses to include Renal Medullary Carcinoma and Co...

Voices of Kidney Cancer

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...

Voice of Kidney Cancer – Aaron and Kim

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...

Voice of Kidney Cancer – Larry Inman

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...

Voice of Kidney Cancer – David Adams

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 ...

Voice of Kidney Cancer – Les Alberts

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...

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