ROCHESTER, Minn. -- Five years after the launch of its $188 million program, Mayo Clinic is the world leader in proton beam cancer treatment and its proponents are looking to build a second center in Rochester.

Based in the Richard O. Jacobson Building in downtown Rochester, Mayo Clinic’s program has treated 4,142 patients as of August. That far surpasses the original goal of treating 3,200 in that time, according to Dr. Robert Foote.

Foote was the chairman of Mayo Clinic's radiation oncology department and director of the proton beam program when it started treating patients in June 2015.

Mayo radiation oncologist and Proton Beam Therapy Program Director Dr. Robert Foote
Mayo radiation oncologist and Proton Beam Therapy Program Director Dr. Robert Foote

He acknowledges that Mayo Clinic’s proton beam treatment facility “was extremely controversial” when it was first proposed.

Newsletter signup for email alerts

“It was a huge amount of money,” Foote said.

Five years later, Foote and others are confident that the impact on patient care has justified the expense.

While the number of competing U.S. proton beam centers has grown to 34, including Mayo Clinic’s Arizona treatment center, Mayo Clinic’s Rochester facility, with its four treatment rooms, is still often busy from before 6 a.m. until midnight, according to Foote.

The pandemic has not made a significant change, as the treatments are considered essential. Patients still are traveling long distances to be treated for life-threatening cancers.

“Mayo has experience that really draws a lot of patients here, even if there are other proton centers closer to them,” Foote said. “We get sent the most complex cases from all over the world that no one else … can treat.”

About 85 percent of Mayo Clinic's proton beam patients come from the Midwest. Nine percent come from the rest of the U.S., and about 6 percent are international patients.

‘Yay. My brain didn’t explode …’

The first patient to undergo the treatment at Mayo Clinic’s brand new facility in 2015 was then 21-year-old Jessica Brenholt Johnson, though she didn’t know she was the first.

Johnson remembers walking into the empty lobby of the Jacobson Building at 8 on a stormy morning on her way to her first treatment for a pituitary gland tumor in her skull that was pressing against her optic nerve. Three surgeries had not resolved it.

She donned her custom-made protective face mask and was secured by herself in the treatment room.

“When it was all over, I was kind of surprised to hear a crowd of people clapping. I was still strapped down. I kind of joined in with the clapping,” remembered Johnson. “I said, ‘Yay. My brain didn’t explode ... so that’s cool.’”

That was the first of six weeks of daily treatments for her, which were ultimately successful.

“It wasn’t painful. It was kind of weirdly relaxing ... weirdly comfortable,” she said. “Except for the table. They call it a couch, but it’s definitely not a couch.”

Johnson was the first of many adults getting proton beam treatment for a brain tumor. Adult patients with brain tumors account for 10 to 12 percent of the people Mayo Clinic has treated in its proton beam facility in the past five years.

A more precise treatment

Proton beam therapy delivers radiation treatment via a “pencil” beam to specific areas of the body much more precisely and with more power than traditional photon radiation treatment. That means other organs are not unintentionally exposed, reducing negative patient side effects and the occurrence of secondary cancers. Mayo Clinic is conducting research about patient impacts from proton beam versus photon treatment. Due to the cost of the treatment centers, research has been limited.

Dr. Nadia Laack, chairwoman of Mayo Clinic’s Department of Radiation Oncology, explained that the precision of proton beam treatment compares very favorably to traditional photon radiation treatment.

Dr. Nadia Laack
Dr. Nadia Laack

“Less radiation is good, when it comes to long-term outcomes,” she said. “Why would you have 20,000 dental X-rays done, when you only need one?”

The amount of radiation that proton treatment spares an average patient is equivalent to 5 million dental X-rays, 50,000 mammograms, or 5,000 chest CT scans, according to Laack.

That's a particular benefit for pediatric patients. About 10 percent of the patients treated with proton beam radiation are children.

The catch is the cost

The catch with proton beam treatment is the cost, which is usually at least double the price of photon treatment for a patient. That fact, coupled with limited research about proton beam treatment, causes many experts to be critical of hospitals investing so much to offer it.

The machines and the buildings needed to house them are considered the most expensive medical equipment available. That’s a health care investment that could have been spent on more traditional treatments.

Building centers in Rochester and Phoenix cost Mayo Clinic an estimated $370 million. A new center on Mayo Clinic’s Florida campus is expected to cost about $233 million.

Mayo leaders are well aware of the criticisms aimed at proton beam therapy, mostly centered around cost.

“If there were no financial differences, there would be proton access at every medical center in the U.S.,” said Laack.

Money from donors gives nonprofits such as Mayo Clinic an advantage over for-profit institutions when trying to foot the bill. Richard O. Jacobson, an Iowa businessman, donated $100 million to help finance the construction of Mayo Clinic's proton beam cancer therapy program. The result is Mayo Clinic doesn’t need to recoup as much of an investment as a medical center that had to pay the entire bill.

Philanthropist Richard O. Jacobson of Des Moines, Iowa, answers questions during a press conference announcing his gift of $100 million to the clinic Thursday, February 3, 2011 at Mayo Clinic Cancer Center in Rochester. His donation will fund the clinic's proton-beam cancer therapy treatment program.
Philanthropist Richard O. Jacobson of Des Moines, Iowa, answers questions during a press conference announcing his gift of $100 million to the clinic Thursday, February 3, 2011 at Mayo Clinic Cancer Center in Rochester. His donation will fund the clinic's proton-beam cancer therapy treatment program.

That means Mayo Clinic can charge the same price for proton beam therapy as it does for intensity modulated photon radiotherapy. The per-treatment cost of proton beam treatment, according to Mayo Clinic’s online cost estimator, is $5,904.

Plus, Mayo Clinic has notably not increased the price for the treatment in the past five years, in order to keep the treatment accessible.

“We think this is important enough for our patients’ health and wellbeing to operate at a lower margin,” said Foote.

Laack estimated that Mayo's competitors charge "at least double" what Mayo does. But some are even higher, "four to five times higher."

Quality of life

When it comes to insurance, cost is a key factor in getting the treatment covered.

Most insurance plans do not automatically cover proton treatment. Mayo Clinic is required to make a special request for each patient. Since the price tag is the same as the covered photon treatment, Laack said about 95 percent of insurance requests are approved.

In addition to its effectiveness, proton beam therapy is believed to be better for a patient's quality of life, with reports of fewer side effects and a shorter series of treatments.

Mayo Clinic's Jacobson Building Tuesday, Sept. 29, 2020, in Rochester. (Joe Ahlquist / jahlquist@postbulletin.com)
Mayo Clinic's Jacobson Building Tuesday, Sept. 29, 2020, in Rochester. (Joe Ahlquist / jahlquist@postbulletin.com)

Prostate cancer patients, who make up about 18 percent of proton beam patients, can typically be treated in five days. That’s compared to a traditional radiation treatment that can take up to 42 days, according to Laack.

Foote points out that reducing treatment by weeks is much more convenient for patients -- it gets them back to their normal lives sooner and it cuts overall costs.

For breast cancer patients, particularly those with tumors on their left side, proton beam treatment seems to reduce long-term complications, such as lung problems and heart attacks.

One of the challenges with proton beam treatment is that due to the extreme costs involved, there is not as much documented medical research into its effectiveness and patient impact as there is for alternative treatments.

To better understand proton beam treatment, Mayo Clinic has 70 clinical trials underway.

Shannon Brownlee, the author of “Overtreated: Why Too Much Medicine is Making Us Sicker and Poorer,” points to the push for research now as evidence that Mayo Clinic may have embraced proton beam therapy too quickly.

Shannon Brownlee. Submitted photo.
Shannon Brownlee. Submitted photo.

“We’ve been led down this primrose path of medicine before. Where’s the data? Where are the randomized controlled trials?” said Brownlee, who is a leader of the national health care advocacy nonprofit Lown Institute. “You started building before you had the data.”

Proton radiotherapy has been used to treat more than 200,000 patients worldwide in the past 30 years and has been used to treat patients with benign brain tumors since 1957, according to Laack.

“Thus, this is not a new or experimental therapy," Laack said. "The problem is the machines are expensive and thus the Catch 22 – you can’t build/justify new and expensive machines without data, but you can’t treat enough patients to do ‘large’ studies to convince people of the benefit because there aren’t enough machines,” she responded. “By charging the same price for protons and IMRT we have tried to address this issue to facilitate trial enrollment.”

Foote explained that when the decision to build the proton beam center was made in 2010, it was not based on one or even a few of the hundreds of scientific manuscripts his team reviewed.

“It was the sum total. Any one by itself was not enough. But all together, the message was consistent and compelling enough to move us forward, lower dose to normal organs, less side effects and complications, better quality of life and function, especially in the young,” he said.

Brownlee countered that she believes the answer to the question of why Mayo Clinic rushed to embrace the expensive proton beam process is more about competition in the medical marketplace.

“Mayo clearly has confidence in this machine. They want to get ahead of the game and they want to command market share,” she said. “There are so many ways $100 million could have been spent, if they cared about the health of their community.”

What’s next?

After five years of treating patients in Rochester and Arizona and soon in Florida, what is next for Mayo Clinic’s proton beam treatment program?

All of Mayo Clinic’s treatment rooms are running at maximum capacity today, but Foote said the demand for proton beam treatment is only increasing.

“Our cancer numbers are not going down in this country. Incidents are going up,” said Laack. “While deaths are going down, it’s more important than ever that we improve recovery and reduce side effects.”

Laack explained that only about 1 or 2 percent of radiation patients receive proton treatment now.

“The realistic number of those that we believe can benefit from proton beam treatment is 10 to 30 times more than that,” she said

Due to steady growth in demand, the Mayo Clinic team is thinking about building more proton beam treatment capacity in Rochester.

“This is what we think we need, as soon as possible, because of our demand. We have not gotten any formal approval yet. Just the approval to start planning,” she said. “We’re envisioning another two rooms. With improvements in technology, the two rooms will probably be able to treat 70 percent of what we treat now in four rooms.”

The timeline for such a project, like everything else in late 2020, is up in the air. However, it does look like Mayo Clinic will not lose its place as the top provider of proton beam treatment anytime soon.