Michael Whitley is 45 years old and lives in Huntsville, Alabama, with his boyfriend, Michael Mueller. He’s the owner and Chief Operating Officer of EngeniusMicro, a techonology-development company focused on defense contracting. Following his kidney cancer diagnosis in 2019, Michael wanted to understand his scans better, so he educated himself on how radiologists interpret scans using YouTube. He has since created 3D-printed models of his organs and tumors. Michaels says the models help him visualize what he’s up against.  
For this month’s Community Spotlight, KidneyCAN spoke to Michael Whitley, a member of the patient community. After almost 9 months of what he thought was kidney stone struggles, Michael was found to have a tumor on his left kidney in September of 2019. Here, he shares more about his diagnosis, his path seeking the best treatment, and the way his diagnosis changed his thinking. 

A Diagnosis of Kidney Cancer

Please tell us as much as you’re comfortable sharing about your diagnosis and its impact on you.

I was diagnosed on September 3, 2019, after almost 9 months of what I thought were kidney stones. I’m lucky that my best friend is a nephrologist. She kept telling me to come into her clinic, and I kept putting it off.

I finally went in for bloodwork and a urinalysis, and they were perfect. She ordered a non-contrast CT just to rule out kidney cancer and found a 9.8cm tumor on my left kidney.

Over the next three months, I had a nephrectomy, left hip rod insertion, and radiation, and I also started immunotherapy.

While cancer is horrible, it is a community filled with great people. Before I was diagnosed, I worked really hard to keep my life segmented. Diagnosis cracked me open emotionally because you can’t maintain that type of segmentation when you are in the midst of cancer. So I never had a problem sharing my diagnosis and actually created a PowerPoint deck called “What’s Wrong with Michael” for my employees when I was diagnosed.

Cancer is not a pleasant experience, but ultimately I am better for it. I try see the goodness in all people and find humor in the situations we go through as patients. I have also had a chance to meet some amazing people.

3D Printed Kidney with Kidney Cancer Tumor - by Michael Whitley

Visualizing What He's Up Against

Michael used his scans to create a 3D model of his kidney and tumor, which he then printed. He has also printed his lung mets, saying it helps him to feel them, compare them, and visualize what he’s up against.

Working When You Have Cancer

What is one tip or bit of advice you would give to someone newly diagnosed with kidney cancer?

Seek out an expert in kidney cancer. I have a great local oncologist who manages my side effects, as well as an expert in RCC only about two hours away who steers the ship. Having confidence in your care team is critical for your mental and physical wellbeing.

How has your diagnosis impacted you in the workplace?

It has been challenging, at times, to maintain my role while working through side effects. I’m lucky that I can work remotely most of the time and schedule work around my doctor’s appointments.

I also have a great team that has helped pick up the slack during the really rough times in my treatment. I feel like I still have something to contribute with my role in the company, so I’ve decided to continue working full-time. From the day of my diagnosis, I have been very transparent with my employees, co-owners, and customers.

Michael Whitley - Living with Kidney Cancer
On hard days, Michael is motivated by spending time on the water with his boyfriend, parents, and dog. He says, “Cancer had a very clarifying effect on my life, on what does and does not matter. Family and relationships are the most important part.” 
Michael Whitley - Living with Kidney Cancer
Michael enjoys spending time with his family and friends. Here, he’s at a baseball game watching the Rocket City Trash Pandas, the minor league baseball team in Huntsville. Michael has season tickets!

Advocating for Himself and Others

How did you make the decision to travel for specialist care? 

When my cancer progressed while I was on immunotherapy treatment, my local oncologist recommended seeking an expert, and I had the same desire. Any treatment change decision is a fork in the road, and I wanted to have the best possible advice.

An RCC expert had recently relocated to only 2 hours away from me. I chose to visit him because I could drive there and he had excellent credentials, as well as personal recommendations from others I know. People I met in patient advocacy groups were critical in helping me make a connection with an expert in RCC.

I made sure my insurance would cover my care, and it did. I haven’t had any issues with coverage for seeing my doctor or getting scans out of state.

What made you decide to advocate for kidney cancer research funding?

My goal when I was diagnosed was to be alive for 5 years. I knew in 5 years there would be new treatments to hopefully help me live even longer.

Robust research funding is critical to developing new treatments and attracting young researchers to kidney cancer, and I can help increase this funding by talking with my representatives.

KidneyCAN has a great framework and training program that makes it easy for me to do this.

What would you like clinicians and researchers to know about the impact of the Kidney Cancer Research Program (KCRP) on patients?

I want them to know how grateful I am for their work. Our lives are literally on the line and waiting for the cures and treatments they are developing.

Michael Whitley - Kidney Cancer Experience

“I want clinicians and researchers to know how grateful I am for their work. Our lives are literally on the line waiting for the cures and treatments they are developing.”

– Michael Whitley

We at KidneyCAN sincerely thank Michael for sharing his story and offering insights to our community of patients, caregivers, doctors, and researchers. Thank you for your advocacy.

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