Drew Bouton was 45 when he found out he had metastatic prostate cancer. The diagnosis in 2001 was shocking, to him and to his doctor, who had assured him before test results came back that it probably wasn’t cancer.

“I asked how long I had to live, and he didn’t want to tell me at first,” Bouton said.

His doctor reluctantly estimated that Bouton’s stage 4 disease translated into two years of survival. “But survival is a bell curve,” Bouton recalls his doctor explaining. “The goal is to get out on the far shelf, and attitude has a lot to do with it.”

Bouton, from Olympia, took that advice to heart, determined to approach cancer with a positive and proactive outlook. “From the very first day, I thought, maybe it will be different for me,” he said.

Bouton started on androgen deprivation drugs — leuprolide (Lupron) injections. His PSA level started to decrease, helped along by the addition of chemotherapy drugs, which shrank his tumors. In 2002, Bouton had a prostatectomy then radiation therapy the following year. Various hormone therapies followed, including topical estradiol and a return to Lupron, plus different drugs including abiraterone — a type of hormone therapy that inhibits androgen production, which fuels prostate cancer.

There was also a brush with oncological celebrity: in 2009, Bouton became one of the first five people in the US to receive a personalized immunotherapy, sipuleucel-T (Provenge), after the FDA approved it for advanced prostate cancer. Bouton’s white blood cells were removed and shipped to New Jersey, where they were inoculated with prostate cancer-fighting cells. He then received four infusions of his souped-up cells in what was a very early type of immunotherapy.  

 

Clinical trials lead to new approaches

Bouton’s medical oncologist at Fred Hutchinson Cancer Center, Heather Cheng, MD, PhD, says his response is remarkable. When he was diagnosed, the cancer had already invaded his lymph nodes. Participating in clinical trials has given him access to novel therapeutic strategies such as chemotherapy prior to surgery at the time he was diagnosed more than two decades ago.

For more than a decade, Bouton’s disease has been stable while taking abiraterone acetate (Zytiga), considered an experimental drug when he began taking it. “I knew because I had advanced cancer, I would need access to cutting-edge treatment and clinical trials,” said Bouton.

“Our goal is to be able to offer all patients clinical trials,” said Cheng, who took over Bouton’s care in 2021. “That’s a key part of our mission because clinical trials help us learn more about new approaches, and they help us develop and define new standards of care.” 

Case in point: abiraterone acetate is now considered standard of care for metastatic prostate cancer, as well as for prostate cancer with aggressive features that remains confined to the prostate. “The whole reason that this drug is a current standard of care is because people like Drew participated in clinical trials,” Cheng said.

Living well with cancer

Bouton has also participated in other clinical trials, including ones related to tumor sequencing and to genetics, due to his family history of cancer. That said, Cheng notes that Bouton’s response is not typical.

“His course has defied expectations in the best possible ways,” she said. “But we do see exceptional cases, and if Drew’s case can help people feel optimistic or be more open to clinical trials, that’s a good thing. The access to clinical trials is part of being cared for at Fred Hutchinson Cancer Center. Patients now have more options than ever to keep their metastatic prostate cancer well-controlled. We know that people can live well with cancer and that we can help it stay in the background and not occupy the foreground of their life.”

Over time, as Bouton watched his life extend far beyond the two years that had been initially predicted, his attitude toward having cancer shifted. He started making plans for the future, tapping into gratitude for time he didn’t expect to have.

“I used to be very frightened about seeing a potential PSA rise,” said Bouton, who continues to have quarterly blood draws to monitor his PSA levels. “For a long time in the early stages, I didn’t think I would live long, and I made that assumption in my relationships with people. After a while, my psychologist stopped me and said, ‘I looked through your file and don’t see anything that indicates you’re going to be dying soon. At that moment, I realized I don’t need to keep thinking that way. I could actively continue pursuing my life.”

When he was first diagnosed, he felt that he didn’t want to burden anyone. But the woman who is now his wife stayed with him, and they got married in 2004. Four years later, they adopted a toddler daughter after fostering her for three years; she used to nap on Bouton’s gurney while he was receiving infusions. She has grown up, never knowing her father as someone who doesn’t have cancer. At the same time, she has witnessed her father deliberately shift his approach to his disease.

“My attitude toward it has gradually changed,” said Bouton, a policy director with the Washington State Department of Financial Institutions, a regulatory agency that oversees consumer protection and financial services. “As I decided to build a family, I’ve gotten less apprehensive. I’ve grown accustomed to the status quo where I am stable.”

A fortunate life

When Bouton would come in for treatment, he would chitchat with his nurses, whom he recalls saying that patients who had a good attitude tended to survive longer. “I tried hard to not go down the ‘why me’ or self-pity path,” he said. “It’s one thing to hear that, but another to put into practice.”

It can be particularly challenging when confronted with the reactions of others. Bouton says it’s not uncommon for people who hear about his diagnosis to seek to differentiate themselves from him as a way to protect themselves, a phenomenon Bouton calls “psychic distancing.” 

“They might ask if I’m a vegetarian,” he said. “When I say no, they think, ‘See, I’m a vegetarian so I’m not going to have what he has.’ They try to find out a bit about my background so they can tell themselves, ‘That’s not going to happen to me.’ It’s not done out of cruelty but out of fear. It’s a form of magical thinking. But I didn’t do anything to bring this on.”

In 2009, Bouton recorded a video for Seattle Cancer Care Alliance, which has since merged with Fred Hutch. In the clip, he talks about preparing to mark eight years since his diagnosis. “I feel pretty fortunate,” he said.

Fourteen years later, Bouton’s feelings haven’t changed.

“Here I am,” he said, “still kicking around.”

Bonnie Rochman is a staff writer at Fred Hutchinson Cancer Center. A former health and parenting writer for Time, she has written a popular science book about genetics, “The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids—and the Kids We Have.” Reach her at brochman@fredhutch.org.

This article was originally published January 15, 2024, by Fred Hutch News Service. It is republished with permission.