Justin Krogh

2^nd year MS Epidemiology

I will never forget May 26, 2024, the day I found out my father, Brian, likely had stage IV cancer, with a likely primary origin of the left kidney. Really, the story is not much different than the many others who find out they have kidney cancer. Most, like my father, encounter pain similar to a kidney stone, only to find out it is something much worse.

Fast forward to the day we met with a urologist at the University of Iowa. We got the heartbreaking news that it indeed was stage IV kidney cancer, but we still needed to find out the exact type. As a person who has worked in healthcare and public health settings, hearing those words sent a chill down my spine as I sat with my parents in that small room in the urology clinic. I knew that most forms of kidney cancer are aggressive and hard to slow down once they metastasize. But what almost brought me peace was the response that came out of my father’s mouth, “Well, I guess we will just figure it out.” And with that, our journey began.

After a biopsy, rounds of imaging, and a discussion with his oncologist, we found that he had clear cell renal cell carcinoma (ccRCC), which is one of the most common types of kidney cancer. 7 out of 10 people diagnosed with renal cell carcinoma are found to have the clear cell form¹. In the current era of kidney cancer treatment, this type of kidney cancer has had breakthroughs in treatment discoveries, for example, targeted and immune therapies, which bombard specific pathways that cancer may utilize to grow and harness the body’s own immune system to regulate checkpoint proteins allowing the immune system to fight cancer^2,3. Shortly after diagnosis, my father was enrolled in a clinical trial at the university that was studying the use of Seleno-L Methionine in combination with Axitinib (Inlyta) and Pembrolizumab (Keytruda) to improve efficacy without added toxicity⁴. By mid-June, my father began daily oral therapy and infusions every three weeks.

While targeted and immune therapies have fewer side effects than chemotherapies, serious complications can still occur. My father spent many hours in the local emergency room in Sioux City due to extremely high blood pressure. From afar, I watched my father and family struggle with the complications and emotional toll of cancer. All I could do was be a compassionate listener on the phone and try my best to be a positive light during a time when they felt like their world was collapsing around them. When they were in Iowa City for appointments, I would join them to be by their side and help them understand the many complicated words and phrases thrown their way. We found out very early that we also had to be fierce advocates for my father to ensure his problems were understood and his symptoms were managed.

During his first line of treatment, my father’s oncologist left the university for a position at the Mayo Clinic. This was a disheartening time for our whole family as we were becoming very comfortable with his oncologist, but after being juggled around for what felt like many weeks, we ended up with Dr. Milhem. Dr. Milhem does not specialize in urological oncology but more so in melanoma. While we found this to be an odd placement, we found out that while ccRCC sounds nothing like melanoma, they are treated with the same targeted and immune therapies. Dr. Milhem was upfront with us about this, and he made sure we knew that he was well-versed in the clinical research of these therapies and was still in close contact with our former oncologist to ensure we were still on the right path. At first, I was very hesitant about this switch, but watching my father interact with Dr. Milhem and observe the outstanding relationship they built made me feel at peace.

While treatment was not a walk in the park, we finally made it to October. October was roughly three to four months after the initiation of treatment, which meant it was time for scans to determine if the treatment was working. To our dismay, the scans showed growth of the known metastasis and new growth in the lungs and brain, which led to another day of MRIs to visualize the areas better. It was determined that brain radiation was in his future, as well as spinal fusion to remove a tumor pressing on the spinal cord.

Seeing my dad go through four rounds of gamma knife brain radiation and an eight-hour spinal fusion surgery quite literally are the hardest things I have ever seen a person go through. While his emotional and physical health were greatly impacted, our family as a whole became more and more fatigued with the stress and fears of the never-ending twists and turns this disease had in store. We were hopeful to participate in a phase I CAR-T cell therapy trial, an already approved promising treatment in cancers without solid tumors. However, the constant growth of the brain lesions and elevated liver enzymes excluded us from the trial. This was all going on at the same time as he began a new targeted therappy Cabozantinib (Cabometyx). This targeted therapy should be more effective than his first line of treatment.

When things could not get any worse, premalignant pleural effusion began making it hard for him to breathe, which led to the placement of catheters on both sides of the pleural space to drain fluid and home oxygen. To combat this new finding, monthly infusions of Nivolumab (Opdivo) in the hopes of clearing the cancer that was growing in his mediastinal lymph nodes. Now, at present day, we have one more infusion before scans in May to determine if the new treatments are finally putting the cancer back in its corner.

I have learned many things through all this, but four things really stand out.

1. Caregiving is more than tending to somebody’s daily needs. It also means being there for your family in any way you can, whether that is going to doctor appointments, helping discern all of the information thrown at you, or being an advocate for your loved one to ensure their needs are met in a healthcare system overburdened with people in my father’s same position.
2. It is okay to be sad and feel lost. You are going through an emotional roller coaster that never ends. Expressing your emotions shows your inner strength.
3. Do not dwell on what could have caused the diagnosis or what you could have done to prevent it. As a person with an education in the field of epidemiology, it’s all I could think about. My father is a farmer, so did exposure to pesticides cause this? Was it something in our water or food? That’s behind you now, move forward tackle the hurdles ahead, and use what you have learned to inform others.
4. Find something that relieves your stress. Faith, exercise, music, therapy, or anything else you think may help will probably do. Remember, your health and well-being are important too.

Simply being yourself and bringing whatever you can to the table makes you a powerful, healing, and compassionate caregiver.

1. What Is Kidney Cancer? | Renal Cancer. Accessed March 23, 2025. https://www.cancer.org/cancer/types/kidney-cancer/about/what-is-kidney-cancer.html
2. Targeted Therapy for Kidney Cancer │Targeted Therapy for Renal Cell Carcinoma. Accessed March 23, 2025. https://www.cancer.org/cancer/types/kidney-cancer/treating/targeted-therapy.html
3. Immunotherapy for Kidney Cancer | Biologic Therapy. Accessed March 23, 2025. https://www.cancer.org/cancer/types/kidney-cancer/treating/immunotherapy.html
4. Phase I/II study of Seleno-L Methionine (SLM) in Sequential Combination with Fixed Doses and Schedules of Axitinib and Pembrolizumab (SAP) in Locally Advanced and Metastatic Clear Cell Renal Cell Carcinoma (ccRCC) | University of Iowa Clinical Research and Trials. Accessed March 23, 2025. https://clinicaltrials.uihealthcare.org/studies/phase-iii-study-seleno-l-methionine-slm-sequential-combination-fixed-doses-and-schedules