Matt McClain never thought of himself as a control freak, but that was before cancer entered his life. In 2018, he and his wife, Heather, were living in Mammoth Lakes, California, where he was executive director of a local environmental nonprofit. A native Californian who was 53 at the time, Matt loved the outdoors. He’d get off work at five; afterward, he’d golf or hike in the summers and snowboard or ski in the winters. That summer, out on the links, he noticed a pain in his back and along his flanks. But he dismissed it. “I’m like, I’m in my 50s. I put on a little weight. I’m playing more golf. Of course, my back’s gonna hurt,” he recalls.

In November, after the Mammoth Mountain resort opened for ski season, he went on a run, and the pain was so intense that he could barely get downhill. Alarmed, he visited his doctor, who ordered lab tests. “He called me back and said, ‘You know, everything on the labs looks good,’” Matt says. But Matt was in the habit of tracking his lab reports, and when he downloaded the results from the patient portal and examined them, he noticed that his GFR—the glomerular filtration rate, a measure of how well the kidneys are filtering blood to remove waste and extra water—had “really tanked” since it was last tested three months earlier. Matt pointed out the dip to his doctor, who ordered an ultrasound. The results revealed two masses in the area of his kidneys—one a suspected lipoma (a usually harmless fatty tumor), the other indeterminate. Heather’s sister, a chemotherapy nurse in Simi Valley, California, checked with her boss, a hematological oncologist, who recommended a CT scan ASAP. Given that there was a one-month wait for a scan, Heather’s sister said, “Go to the emergency room and just tell them your back hurts, and they’ll happily do one.”

“So I did, and they did,” Matt says. “Afterward, I was sitting there in the ER, and the doctor came and sat down and looked at me and my wife, and he said, ‘You’ve got two masses in there. One of them is a lipoma, but the other one looks like it could be cancer.’ And I remember looking at my wife and saying, ‘Well, here we go.’”

Caner Health Matt McClain

Matt McClainAri Michelson

“You May Not Make It Off the Table”

In mid-December, Matt and Heather headed down to Simi Valley, where the hematological oncologist admitted him to the hospital where Heather’s sister had privileges. At warp speed, he had another CT scan, a brain scan and a bone scan—“stuff that would have taken weeks otherwise,” he says. “I will forever be thankful for that.”

Matt was diagnosed with renal cell carcinoma, the most common type of kidney cancer. The cancer had not spread to his bones or brain, but there was a tumor in his left kidney and one on his left adrenal gland. There was also a tumor thrombus (a tumor inside a blood vessel) inside his renal vein that was working its way up his inferior vena cava, a major vein that returns oxygen-depleted blood from the lower body to the heart. Because Matt’s case was complex, the Simi Valley oncologist got him in to see two top doctors at Cedars-Sinai Medical Center in Los Angeles—a urological surgeon and a transplant surgeon. The plan was for the urological surgeon to remove the left kidney and adrenal gland and then for the transplant surgeon to take out the thrombus, which had reached Matt’s diaphragm.

You can have control over how you react to things. 

“This is a serious surgery,” the urological surgeon told Matt and Heather at their consultation. “And I just want to be clear: There’s a chance that you may not make it off the table.”

Hearing that, “we’re just losing our minds,” Matt recalls. “And then we went to see the transplant doctor, and they gave us little coffees, and he was such a charming man. He’s like, ‘Well, this is serious, but I think we can do this.’ I think his confidence and demeanor helped, but we had this mix between hope and terror.”

The surgery was scheduled for January 16, 2019. The three weeks leading up to that date were especially tough and filled with anxiety. But Heather had a mantra that Matt has since adopted: one day at a time. “I think that was, for me, almost lifesaving, having someone there who was just focused on getting through each day.”

The 13-hour surgery was successful. Matt spent about two days in an intensive care unit before being moved to a regular hospital room. There, he started retaining fluid, gaining 30 to 40 pounds and swelling up painfully because his right kidney had been injured during the operation. Two rounds of dialysis removed the fluid, and slowly, the kidney recovered. He was discharged after 11 days.

The pathology report confirmed that Matt had Stage IV, Grade 4 kidney cancer. The good news was that there were no exotic features; the bad news was that the grade meant that the cells were poorly differentiated and the likelihood of recurrence was extremely high. Worse still, a “whole litany of issues” cropped up after the surgery.

One Step Forward, Two Steps Back

Matt recovered from the operation at his sister- and brother-in-law’s home. Everything was on track until he developed a seroma, an area around the surgery that accumulated clear fluid. When it got too big, Matt returned to the hospital in Simi Valley to have a drain put in; in the process, he contracted MRSA, a highly antibiotic-resistant bacterial infection. “I had to go back in the hospital for an additional 10 days while they treated this MRSA infection with IV antibiotics,” he says.

Matt and Heather returned to Mammoth Lakes in early April and even went camping. Then the seroma returned, which meant another drain and more antibiotics. But the doctors at Mammoth Hospital cleared the infection.

Matt thought long and hard about where he wanted to get his follow-up cancer care. While Cedars-Sinai is a great hospital, friends and physicians he spoke with mentioned the University of Southern California (USC), insisting that its reputation for urinary tract cancer was “top-notch.” He and Heather went to meet Haris Zahoor, MD, who took him on as a patient. Fears of recurrence were top of mind for Matt, but Zahoor set him at ease, saying, “We’re not gonna think that way. Right now, the chances of your getting cancer are the same as for me or anybody else. You don’t have cancer in your body. We’ll just take it scan to scan.” And that’s how Matt lived, with scans every three months for almost two years.

“I was really looking forward to that anniversary because if you hit two years, the likelihood of recurrence drops a certain percentage,” Matt says. But about one month shy of the date, a scan found lesions on his liver that a biopsy confirmed to be renal cell carcinoma. In January 2021, Matt’s USC doctor—Zahoor had moved away—was able to prescribe a relatively new first-line immunotherapy and targeted therapy combination to keep the cancer from spreading.

In the midst of the COVID-19 pandemic, Matt drove to USC every six weeks for a double-dose infusion of the immunotherapy drug and a scan. “I sailed through that,” he says. But almost immediately after starting the targeted therapy, taken as daily pills, he began to lose his voice and was incredibly fatigued. Mouth sores and itchy palms followed—all manageable side effects. But then his red blood cell count climbed so high that he had to undergo frequent blood draws, removing two pints at a time because his doctors were worried that he might otherwise have a stroke or heart attack. Although his USC doctor said this wasn’t a side effect of the drug, he finally “capitulated” and took Matt off it. However, Matt’s treatment had already damaged his thyroid, and finding a dose of thyroid medication that’s neither too low nor too high is an ongoing struggle.

No Evidence of Disease

By late 2021, none of the previous lesions on Matt’s liver could be visualized on a CT scan. He stayed on the immunotherapy drug until March 2023, when he was declared NED—no evidence of disease—and returned to active surveillance, with scans every four months.

“When I tell people I’m NED, they think everything is great,” he says. “But if someone asks me how I feel, I say, ‘Honestly, it’s in some ways even more terrifying than having active cancer.’ It’s like, imagine you had a backpack on and inside was a bomb, and you didn’t know when it was going to go off—in two days, two weeks, two months, two years or never. If it goes off, you’re gonna die. And you can’t take the backpack off. You wear it every day. That’s my life right now.

“I’m stoked that I’m NED. I try to live my life as fully and robustly as I can. But you know, I wear that backpack every day.”

The sense of not being in control has plagued Matt throughout his cancer experience. “I would go down these multiday spirals of anxiety. It was just awful,” he recalls. “I’d wake up my wife at like four o’clock in the morning, having not slept, just online, doing these deep dives into this stuff. I knew I was not in control of my ability to handle this disease.”

For help, Matt turned to a psychotherapist whom he saw weekly, then twice a month and now monthly, and his primary care provider put him on a selective serotonin reuptake inhibitor, a drug often used to manage depression. “That experience was life-changing,” he says. “It has helped me, not just with my cancer but with everything.” And he had an epiphany: “I realized that you can have stability and clarity and control over how you react to things.” A recent experience confirmed his mellower outlook. An acquaintance who had cancer died, and “instead of dwelling on it for the next week and a half and not wanting to get out of bed, I was able to process it and move on,” he says.

“I try to keep that in mind for the experiences I have moving forward. Even when things seem hard, there are sometimes really good opportunities nestled in there, and you’ve just got to find those and make the most of them.”

For a related sidestory, see “How to Survive the Cancer Roller Coaster.”