Carie Gort’s Kidney Cancer Story

This is a guest post by Carie Gort, 55, a patient advocate and stage 4 kidney cancer survivor/thriver. She lives in Grand Rapids, Michigan.

I had been feeling generally unwell for several years leading up to my 50th birthday. Often tired and continuing to lack energy, it was something I had just grown used to.

A few months following this June 28th birthday, I went to my primary care doctor complaining of several mild and vague symptoms that were, if nothing else, quite frustrating. At that appointment, I insisted on bloodwork, a urinalysis, and a chest x-ray for a cough that I couldn’t seem to get rid of.

My bloodwork was off but not alarming, seemingly pointing to perhaps anemia. The chest x-ray, however, did show four very small nodules – two on each lung. Though I was told they were not concerning, the suggestion was made that I get a CT scan to be certain. On August 8, while sitting at my desk at work, I read the MyChart results for this CT scan, which stated: “lung nodules likely metastasis from renal cell carcinoma.”

Two weeks later on August 22, l had my left kidney removed. At that time, it was decided that we would monitor things. But in January 2020, an MRI showed some spots on my pancreas that, through a biopsy, turned out to be renal cell carcinoma as well. At that time, I started immunotherapy with Opdivo/Yervoy (nivolumab/ipilimumab), a combination that worked well for 18 months.

 At the 18 month mark, a routine scan showed the cancer had spread to my liver. I immediately met with my oncology team and I was given the opportunity to participate in a phase 3 clinical trial. The trial compared tolerable does of Cabometyx (cabozantinib) versus the combination of belzutifan (Welireg) and Lenvima (lenvatinib). I was randomized to the belzuitfan/Lenvima combo and have been on this trial for 3 years as of June 2024.  

One of the most important things I learned and often share with others newly diagnosed is the importance of controlling what you are able to. For example, what you consume (food/drink), what you expose yourself to (chemicals in hair/makeup/cleaning products), your activity, and your ATTITUDE! Attitude is a BIG one!

For others facing kidney cancer, always seek a second opinion when needed.  And try to spend each day grateful, living and thriving to your best ability.

I’ll never forget meeting a man with metastatic prostate cancer. Diagnosed 25 years ago, he expressed that he’d spent the better part of that 25 years worried about recurrences – which happened but were always addressed. He stood before me a thriving man, frustrated by the time he wasted.

I vowed then not to let that happen to me. I FULLY expect to live many more decades and want to do my very best to enjoy every moment.

To date, I remain free of any active cancer and look forward to it staying that way! I’m also looking forward to continuing to thrive and enjoy my children and grandchildren for many decades to come!