98 brain tumors: lessons in fortitude and forgiveness

August 30th, 2017

The black mole on the top of the young dad’s head did not look particularly ominous.

At the time, Leland Fay didn’t give it much thought. He was busy, coaching his sons, then ages 8 and 5, in hockey, working as an aerospace engineer at Lockheed Martin and enjoying the Colorado mountains during frequent hikes with his wife, Sarah, and the boys.

Fay has fair Irish skin and knew he was at greater risk for skin cancer, so he made time for regular checkups.

Leland Fay hiking with his two sons. (Photo courtesy of Leland Fay.)

Unfortunately, a Colorado Springs dermatologist dismissed the mole as no big deal and froze it off.

Months later, Fay would learn through a biopsy that the mole was a sign of a very deadly attacker, melanoma.

Detected early, melanoma can be treated. Unchecked, it can grow fast.

Fay had the misfortune of coping with melanoma that had already spread, first to his lymph nodes and organs, then in an ominous show of force, emerging as 98 tumors in his brain. Once the melanoma had spread, Fay faced terrible odds. He learned he had as few as six weeks to live.

But Fay refused to succumb to his lousy prospects and jumped into research mode, first finding a clinical trial for immunotherapy in Los Angeles, then receiving critical help from a neurosurgeon at UCHealth’s University of Colorado Hospital. Dr. Robert Breeze used highly targeted gamma radiation to disarm the 98 tumors. One brain tumor also required traditional surgery.

Now, five years after his melanoma diagnosis, Fay savors the routine of normal life. A writer in addition to being a software engineer, he chronicles his journey on his blog, 98 Brain Tumors. Along with work and everyday life in their hometown of Monument, he gets regular treatments and scans, but has joined a very unique club. Only about 5 percent of patients with metastatic melanoma are alive five years after diagnosis.

Life expecting going up astronomically

Fay’s survival may offer a beacon of hope for other patients.

“Life expectancy is going up astronomically because of new targeted therapies,” Breeze said.

Leland Fay, left, with Dr. Robert Breeze, who used highly targeted radiation to treat 98 tumors in Fay’s brain.

“In the old days, if a patient showed up with 20 or 30 or 40 tumors, I would have said there was nothing I could do and sent them to hospice. Now, I can treat 20 tumors in a day,” Breeze said.

Because of Colorado’s sunny climate, rates of melanoma are higher here than in many other states. Like other academic medical centers in sunny places from Australia to Los Angeles, the University of Colorado Hospital has become one of the world’s top centers for skin cancer treatment and research. Breeze and his colleagues pioneer the newest treatments and for years, have advocated for very aggressive treatment of brain tumors. They also keep close track of patients with frequent scans ­ – as often as every two months – so they can immediately pounce on any new tumors and neutralize them.

Along with new, promising immunotherapy drugs, aggressive monitoring and gamma radiation treatments are paying off.

“I think we’re going to see more people like Leland who present with metastatic cancer and become long-term survivors,” Breeze said.

Fay is grateful to be part of an exclusive club of unlikely survivors. But after living through excruciating pain and heart-stopping fears, he is a pro at quietly carrying on. It’s as if he’s done battle with the meddlesome gods of ancient Greek myths. If he sticks his head up, his foes just might notice and wreak their vengeance again.

Instead of declaring victory, Fay embraces lessons of fortitude and forgiveness. He considers himself incredibly lucky to go to work, tuck his boys in each night and bore his wife with his incessant talk about hockey.

Forgiveness

Fay hadn’t given his mole much thought until it resurfaced a few months after the dermatologist froze it off. This time, it was bigger and nastier. He decided to go see his primary care doctor.

“I had a weird feeling about it. I didn’t know what a lymph node was, but one of the lymph nodes in the back of my head had started to swell,” Fay recalled.

His doctor seemed spooked and sent him back to the dermatologist.

Leland Fay loves hockey and helped coach both of his sons. (Photo courtesy of Leland Fay.)

This time, his dermatologist’s partner did a biopsy. A few days later, when the results came in, Fay’s original dermatologist called crying. The results confirmed the worst. In April of 2012, at just 41, Fay was facing melanoma that appeared to be spreading fast.

Before he could grapple with treatment options, Fay first had to make a profound decision.

“It was clear to me that I had to forgive them right away,” he said of the dermatologists who had initially missed the melanoma diagnosis. “I just imagined myself dying a miserable death and being very angry. And I was not going to carry that anger with me.”

He also believes that anger can weaken the immune system, so he made the decision to let go of any blame.

Fay then had to get busy with treatments. Almost immediately, he had to have three surgeries. The first removed lymph nodes from his neck.

Then he had to go back for what’s called a full right neck dissection.

“It’s a precautionary thing. They go in and remove all of the lymph nodes in your neck. It looks like your throat has been slit. They start from the back of your skull and cut around to the front and use these big metal stitches. It was pretty nasty.”

Then, he had to have surgery on his scalp to remove lesions that had spread.

Enduring Frankenstein surgeries should have been enough of an indignity, but in August, Fay got more bad news.

“They found that the cancer had spread to my lungs, liver and stomach. That’s when I was stage 4.”

Fay visited Dr. Rene Gonzalez at UCHealth and saw specialists in Pittsburgh and Los Angeles.

Back in 2012, immunotherapy research was very new and Fay was thrilled to be accepted into a clinical trial in Los Angeles. He had to pay his own way to travel to California every Thursday for what felt like torture.

“They were testing the toxicity of combination therapies. It was brutal. I went a couple of weeks without sleeping. I had itchy, horrible hives and fevers and had massive burns,” Fay said.

Despite the suffering, he never considered quitting. And scans seemed to show that the cancer tumors throughout his body were decreasing in size.

But after four months, a new scan showed what appeared to be 43 tumors in Fay’s brain. He remembers his doctor in Los Angeles holding his hand and tearfully delivering the bad news.

“I flunked out of the trial. They weren’t sure if the tumors in the brain had been there previously. It was unclear if the immunotherapy had had any impacts. But I was out. It was mind boggling.”

A shot at survival

Fay returned to Colorado and made two key decisions. First, he decided to embark on an ultra-healthy diet. He stopped eating meat and sugar, a practice he has continued for years. His blood work improved. And he consulted again with Dr. Gonzalez.

Instead of closing the doors on treatment options, Gonzalez told Fay he could see his colleague, Dr. Breeze, who was having positive results for brain tumors with gamma radiation treatments, also known as stereotactic radiosurgery or Gamma Knife.

Sarah Fay has been a rock of support for her husband as he has dealt with cancer. (Photo courtesy of Leland Fay.)

Offered a tentacle of hope, Fay had to fight for the treatments. His insurance company at first refused to pay for the radiosurgery. But a screening physician saw that he was doing relatively well.

“Even though I had all these brain tumors, I could speak and walk and talk. I was coaching my boys’ hockey. And I was going to work every day.”

The insurance company gave Fay their approval and a shot at survival.

Dr. Breeze began systematically treating about 10 of Fay’s tumors each month. As with the immunotherapy trial in Los Angeles, the radiation treatments sometimes felt like torture.

“They use a screwdriver to drill a cage into your skull. Then you go into a tube. I was like a human toner cartridge,” Fay said. “It’s not a knife. They take beams of radiation and aim them at a specific spot in your brain.”

Each treatment would take about four hours. Sometimes, with sedation, Fay could sleep through them. The cage holds the patient’s head completely still so Breeze can precisely aim the gamma rays at each tumor.

In the summer of 2013, Fay thought he was nearly done when a new scan showed additional brain tumors, bringing the total to a stunning 98. The others were not growing, so Fay’s doctors theorized they had been there all along. They were just hard to see on the scans.

Fay decided he wanted them all zapped at once.

“You’re dealing with cancer. The longer it’s in there untreated, the greater the chance that it’s going to spread,” he said.

So he told Dr. Breeze his plan.

“I want you to get all 52 in two months. I don’t want to string this out.”

So that’s what they did.

Fortitude

For some patients, about 25 percent of the brain tumors will need additional treatment beyond the gamma radiation. Fay was lucky. Only one of his 98 needed to be cut out surgically.

He also got lucky that as the brain treatments kept the melanoma at bay, science was advancing. In 2014, some new immunotherapy drugs received FDA approval and Fay was able to once again receive treatments that would encourage his immune system to fight the cancer itself. He’s on the same drug that former President Jimmy Carter received for his melanoma. It’s called pembrolizumab or Keytruda.

Leland Fay has kept active while fighting cancer. (Photo courtesy of Leland Fay.)

Every three weeks, Fay goes in for an infusion that takes about 30 minutes. And he continues to get scans to monitor his progress. He’s used to the emotional roller coaster ride. About a week before his scans, he finds that the anxiety builds. Each scan has continued to show that his cancer has not progressed and Fay can let his guard down temporarily.

His boys are now 10 and 12. When Fay first received his diagnosis, he felt he had to be pretty honest with the kids.

“I told them, ‘I have cancer and there’s a chance I could die and we’re all going to do the best we can to fight this. We believe in God and we have faith. Whatever’s supposed to happen is going to happen.’

“We all cried a lot.”

Throughout the ordeal, he said his wife has been a saint. He doesn’t claim that status himself. Sometimes the anger boils up and he hits a punching bag to get it out.

Doctors marvel at Fay’s resiliency.

“He’s doing great. I hope he lives a very long life,” Breeze said.

Fay does not know precisely why he’s thriving, but he believes he’s the beneficiary of a constellation of approaches.

“In hindsight, the diet probably helped. The immunotherapy (in Los Angeles) probably helped,” he said.

And Dr. Breeze’s gamma radiation treatments certainly have helped.

“When you have a serious cancer diagnosis, you need to find the best people. There’s a pretty short list of those who are best and I think Dr. Breeze and his team are the best in the country,” Fay said.

Great care has literally been a matter of life and death for him.

“The longer I can stay around, the closer we are to a cure for cancer.”