‘Don’t fear the treatment, fear the cancer’

His fear of battling prostate cancer left Rob almost lifeless, until he finally sought a different reality.
December 5th, 2018

Sixty-two-year-old Rob Lagerstrom arrived at UCHealth Cancer Center – Harmony Campus for his last day of radiation treatment wearing a blue and white-starred tutu, a gold belt and a red t-shirt with his superhero’s name on it.

“Have no fear, LupRob’s here,” he said.

Dr. Petit and Rob, who is dressed in red shit and blue-starred tutu, and a black wig
Rob Lagerstrom, right, as “LupRob” — a play on the hormone suppression therapy drug, Lupron. that he’s been taking to battle his prostate cancer — poses with Dr. Joshua Petit, radiation oncologist with UCHealth in northern Colorado. Photo courtesy of Rob Lagerstrom.

For those not familiar with hormone suppression therapy for prostate cancer, Lagerstrom’s superhero was a play on the hormone suppression therapy drug Lupron, which he’s been taking since July 2018, when he finally decided to fight his cancer.

“I love Rob’s attitude,” said Dr. Joshua Petit, radiation oncologist for UCHealth in northern Colorado. “His decision to use humor and a focus on helping others is a meaningful way for him to deal with the intense emotions that go along with having a life-threatening cancer.”

Lagerstrom wasn’t always so positive, however. His journey has given him a will to live again and a new message to push out with his video camera.

“Don’t spend 20 years worrying about prostate cancer. Just check it out, and if you have it, get rid of it,” he said. “Don’t fear the treatment. Fear the disease.”

Focusing in

As a teen, Lagerstrom found that being behind a camera allowed him to explore new things and it fueled his desire to connect with people through multimedia.

His passion grew into a career, first at the Tallahassee Camera Center then on large-scale commercial productions in Birmingham, Alabama. Although he honed his craft shooting television commercials, corporate training and promotional films, he had a desire to connect to people on a more personal level.

In 2010, he gave up the security of his job and health insurance — and headed west.

“A change in latitude, a change in attitude,” he explained.

But his new vagabond lifestyle was challenging, especially when he begin having health problems.  While living in Colorado in 2011, his doctor told him after a prostate exam that he needed further testing — advice he would not heed to for five years.

video screen shot of prostate area
Screen shot of Lagerstrom’s 1950s-style, sci-fi-inspired short film called “Robbie’s Rad-ventures,” which he’s shared with others facing similar treatment in an effort to help them understand what they may have to go through. Photo courtesy of Rob Lagerstrom.

What is a prostate exam?

Two main tests are commonly used to screen for prostate cancer: a rectal exam, which involves a gloved finger inserted into the rectum to feel the prostate, and the prostate-specific antigen test, a blood test that checks for the tumor marker for prostate cancer.

“Men should ask their primary care doctor about prostate cancer screening, and if after discussing the risks and benefits they agree to proceed, then their doctor can obtain a PSA blood test and perform a prostate exam,” Petit said.

In a bind

Before 2010, Lagerstrom had spent decades paying for a health plan he never used, but now he found himself without one when he really needed it.

“Living without health insurance gets riskier every year older one gets,” Lagerstrom said. “The chance of getting something like cancer is too fearful to comprehend, so one ignores it…until they can’t.”

Finally, in January 2016, Lagerstrom got a policy he could afford through the Affordable Health Care Act. He decided to follow up on the concerns the physician had voiced more than five years earlier.

He got a PSA test, which revealed a score high enough to lead to more testing.

“If the PSA is sufficiently high and concerning, or if the prostate exam is also suspicious, then a biopsy of the prostate is performed,” Petit explained. “If the biopsy shows there is cancer, then it is given a Gleason score, which reflects the aggressiveness of the cancer.”

Test results

Pathologists grade prostate cancer on a scale of 1 to 5 based on how similarly the cells in the biopsied tissue look like normal prostate tissue under a microscope, according to the American Cancer Society. If it looks like normal tissue, it’s given a 1; very abnormal is a 5. Patients suspect prostate tissue samples, however, often have two or more different scores, and that score is added to get the Gleason score.

The first number assigned is the most common grade. For example, if the Gleason score is written as 3+4=7, it means most of the tumors are grade 3, while less are grade 4. Other ways the Gleason score may be listed are 7/10, Gleason 7 (3+4) or combined Gleason grade of 7.

The higher the Gleason score, starting at about an 8, the more likely it is that the cancer will grow and spread quickly, according to the ACS. And though Lagerstrom had a score of 8, his scans showed at the time that the cancer hadn’t spread beyond his troublesome gland.

Lagerstrom, though, had a high-deductible insurance plan, and the cost of the tests and specialty visits left Lagerstrom’s budget stretched. He decided to try a different approach.

Medical marijuana

“I had been reading about how cannabis had been shown to cure cancer, so I did more research,” he said. “I decided to be a guinea pig for science and see for myself if I could cure cancer by taking large doses of CBD and THC oils.”

CBD, or cannabidiol, and delta-9-tetrahydrocannabinol, or THC, are two of the most studied biologically active components in marijuana, called cannabinoids. According to the American Cancer Society, scientists have reported that cannabinoids slow growth and/or cause death in certain types of cancer cells growing in lab dishes. And some early clinical trials of cannabinoids are showing that they are safe for treating cancer, but studies have not yet proven that they help control or cure the disease.

Screen shot of Lagerstrom’s 1950s-style, sci-fi-inspired short film called “Robbie’s Rad-ventures,” which he’s shared with others facing similar treatment in an effort to help them understand what they may have to go through. Photo courtesy of Rob Lagerstrom.

Lagerstrom was able to volunteer at a hemp co-op where he could barter labor for oil. And though his treatment wasn’t

costing him anything, it didn’t seem to be working either.

The lowest point

Lagerstrom had quit drinking alcohol in October 2016, but his use of THC increased to a level where he wasn’t aware what his normal state was anymore. He was chronically fatigued to the point that he was sleeping 12 to 14 hours a day. He hadn’t seen a physician in two years. He was picking up photography and video jobs here and there, but he was suffering — mentally and physically.

“By spring (2018), the life essence had been drained from me,” he said. “I thought this was it for me. I was living to die at that point.”

His income had fallen below the level where he could afford an insurance policy, and he was placed on Medicaid.

“I had been a proud, self-supporting person my entire life, always paying my own way and asking little of others,” he said. “It was a humbling blow to the psyche to have a life-threatening disease and no way to pay for it. I just assumed that any treatment Medicaid would pay for would be basic at best and nonexistent at worse.”

Back to the doctors

It wasn’t until he had a chest cold that wouldn’t go away that, weak and sick, he decided to return to a physician.

“A quick chat with the doc about what I had been doing and another PSA test later was the inciting moment — as they say in the movies — for me to ask about what I could get for nothing on Medicaid,” Lagerstrom explained.

The answer heartened him.

“I felt pretty foolish but also very relieved that maybe my life was not over yet,” he said.

A clip from Lagerstrom’s 1950s-style, sci-fi-inspired short film called “Robbie’s Rad-ventures.”
Photo courtesy of Rob Lagerstrom.

Battling prostate cancer

A bone scan showed the cancer had not spread beyond his prostate in the years he was using alternative methods for treatment. He would need 42 days of radiation and two years of hormone suppression therapy (Lupron) to starve the

cancer of its testosterone supply. He stopped using cannabis oils.

“It was like I’d flipped a switch,” Lagerstrom said. “I was taking bike rides. I felt like a normal human being again.”

An idea to help others

It was during his treatment at UCHealth Cancer Center – Harmony Campus in Fort Collins that his desire to help others — his longtime passion — through social media came back to him.

“At first, like most people, I didn’t want to let everyone know I had cancer,” he said. “It was only through my positive experience at UCHealth that I regained my confidence in the medical establishment and found some hope.”

Lagerstrom used his medical scans — and a narrative that explains what they mean — to create a 1950s-style, sci-fi-inspired short film called “Robbie’s Rad-ventures,” which he’s shared with others facing similar treatment in an effort to help them understand what they may have to go through.

Lagerstrom’s 1950s-style, sci-fi-inspired short film called “Robbie’s Rad-ventures,” which he’s shared with others facing similar treatment in an effort to help them understand what they may have to go through. Photo courtesy of Rob Lagerstrom.

“When cancer strikes, we often cannot control a lot of what is happening to us,” Petit said. “However, we may have the ability to control our reaction to these things, and that is how Rob has chosen to approach things.”

As Lagerstrom explained, “Like most people who have grappled with life-threatening situations, be it accident or illness, I discovered that it takes facing death to really find the value of life.

“Fear the disease, not the treatment,” he continued. “Get checked out early and often. Do not let it spread. Nip it in the proverbial bud, and get on with life.”