Beating stage 4 kidney cancer: Dan’s story

Dan DiClemente has maintained one important attitude throughout his life – “If you’re a person who has done the best you can by other people throughout your life, what more can you ask for?” A carpenter by trade and a public official for the Rochester City School District for two decades, Dan has lived up to this mantra. He has been married to his wife, Laura, for more than 30 years and they have two daughters, Stephanie and Katie.

He's always maintained a healthy lifestyle, too. “I went for a physical and had blood work done every year,” he says. “I never had any real health issues. But all of a sudden, I started to feel a pain in my back.”

“I actually thought it was my bed because I would wake up in the morning and my back would be sore. I told my wife ‘We have to get a new bed!’” When he noticed his weight steadily declining, he contacted his doctor, who sent him for bloodwork before an upcoming physical. When Dan’s doctor saw the results, he advised him to go to the hospital, believing he was anemic.

“I didn’t really want to spend all night in the emergency room, but my youngest daughter encouraged me to go and Laura met us at the hospital,” Dan recalls. “They ran some test and performed a CAT scan. Around 1:30 in the morning, a nurse came in and told us ‘I’m sorry to be the one to tell you this, but you have stage 4 kidney cancer.'” The CAT scan revealed he had a football-sized tumor on his left kidney, that had spread to his lungs and lymph nodes.

“I did something none of us should ever do – I Googled it,” Dan says. “What I found was that it isn’t a death sentence, but it’s close.”

Changing the narrative

Dan used that harrowing discovery as an opportunity to take as much control of his health as possible — he would spend the next few weeks researching what treatments were available, where these treatments were offered and consulting with oncologists to find the right fit.

His search brought him to Roswell Park Comprehensive Cancer Center and into the care of Thomas Schwaab, MD, PhD, Associate Professor of Oncology in the Department of Urology. “I hit it off with him right away,” Dan says of Dr. Schwaab.

In January 2020, Dan underwent a total nephrectomy – the removal of the affected kidney and the entirety of the tumor. However, the surgery became more complicated when Dr. Schwaab observed the tumor had spread up Dan’s adnominal cavity into his inferior vena cava, the vein that brings deoxygenated blood back to the heart. Dr. Schwaab proceeded to remove the tumor through an IVC thrombectomy, carefully removing it from the vena cava around Dan’s heart.

“He performed the surgery beyond my expectations,” Dan says. “I didn’t lose my spleen; he was able to detach the tumor from everything.” Although the cancer was downgraded to stage 3, after a consultation with medical oncologist Saby George, MD, FACP, Professor of Oncology and Medicine, he was reminded that the fight was not over.

“Dr. George told me ‘I would not sit by and do nothing’,” Dan remembers. “This was an aggressive cancer, and it was most likely still in my bloodstream and would continue to spread.” Dr. George recommended Dan for a six-month clinical trial, just weeks before the COVID-19 pandemic hit the United States in March 2020.

“They canceled all of the clinical trials. I was remembering Dr. George told me to not sit by and do nothing, yet here I was. At my first scan after surgery, it showed the nodules in my lungs were growing.” His cancer was upgraded again to stage 4.

“I wasn’t interested in prolonging my life expectancy month by month,” Dan states. “Dr. George instilled in me very early that I had the chance to eradicate it.”

Four months after undergoing a total nephrectomy, Dan began a combination of immunotherapy, receiving four rounds of ipilimumab and nine rounds of nivolumab over the course of nine months. “Even while I was getting treatment, I was still on my computer working,” Dan remembers, “I didn’t suffer during it, I didn’t miss work, and I came out with a completely remarkable outcome.”

After many hour-long trips to Buffalo from Rochester, Dan was declared cancer-free, and has been in remission for over nine months.

Looking forward to the future

Dan is quick to credit his incredible recovery to his care team at Roswell Park. “All I know is that, if not for Roswell Park, I would not be alive today. I have no doubt in my mind,” he says. “I’m very fortunate that things worked out the way they did.”

One major life decision Dan was most concerned about when he was diagnosed at 52 years old was retirement. Being a public employee, he needed to be 55 years old and to have served in his position for thirty years to be able to retire. “It really bothered me. If I were to pass away, my wife wouldn’t be getting my monthly payments. When I explained this to Dr. Schwaab, he said ‘Don’t worry, we’re going to get you to retirement.’”

Dan and Laura have already begun making travel plans for when he retires, beginning with a trip to Iceland this August. Exactly when Dan will begin this next phase of his life is still being decided, but he feels much more secure in his ability to make the choice on his terms. “I’m very fortunate that I’ll be able to enjoy my pension with my wife,” Dan emphasizes. “We’re going to travel and do the things we want to do, all because of researching and finding the right place for me, which was Roswell Park.”

Dan’s advice to anyone else going through a cancer diagnosis is simple: “Go into it with a positive attitude and know that in doing what your care team tells you to do, and picking the right people to surround yourself with, you can come through the other side like I did.”