Meet Mike Schafer, squamous cell carcinoma survivor
Whether you read Mike Schafer’s blog or meet him face-to-face, there are a few things you’ll quickly learn about him: he’s a true leader, a real family man and—quite possibly—the world’s biggest Maryland Terrapins fan.
Mason prepares to “go long” during a football game with Dad.
It was a combination of all these traits, along with superior care, that helped Mike win a recent bout with cancer.
Natural leadership skills took over from the start.
When Mike was diagnosed with cancer on the base of his tongue (that had spread to two lymph nodes on the left side of his neck), he set out to find the best treatment possible. Haunted by memories of his mother’s lung cancer diagnosis a few years before, Mike was determined to take a more active role in his treatment process.
“My Mom died of lung cancer. She had seen one doctor during her diagnosis who made it clear that she had a terminal disease. She didn’t seek out any other opinions and became a passive follower,” he says. “I chose a different route. I saw five different surgeons, three different radiation oncologists and two different medical oncologists.”
A lump leads to action.
Mike first noticed a lump on the left side of his neck, just under the jaw line, in April 2006. “Like most people, I didn’t think much of it at first. After several weeks, it hadn’t gone away and it started to get a little bigger and that’s when it started to concern me.”
Mike decided to get it checked out by his Primary Care Provider (PCP). “His words were reassuring, but his demeanor and the look on his face—the nonverbal cues—led me to believe there was something to worry about.”
When his PCP also told him to follow up with an Ear, Nose and Throat (ENT) specialist, Mike says panic mode set in. “I wasn’t eating, wasn’t sleeping, I was in a daze.”
Like many patients, Mike took to the Internet to find some answers and quickly became convinced he had some sort of lymphoma. He says he was praying for Hodgkin’s Disease, which is typically less deadly than the Non-Hodgkin’s variety.
After a biopsy, however, Mike found out the actual diagnosis: squamous cell carcinoma. A PET scan later confirmed that it had originated at the base of his tongue and had spread to two lymph nodes in his neck.
While squamous cell carcinoma is not an uncommon head and neck cancer, Mike was surprised to find out that it is usually associated with older people who have a long history of drinking and smoking. Mike says he just didn’t fit the bill, “I’m 35, have never smoked and don’t drink much at all.”
After interviewing “umpteen” surgeons as Mike puts it, he chose Dr. Joseph Califano, Associate Professor of Otolaryngology, Head and Neck Surgery at the Sydney Kimmel Comprehensive Cancer Center at Johns Hopkins, to perform the delicate surgery. Dr. Califano recommended that Mike also start a course of radiation treatment.
Mike says he took four weeks to research different radiation options.
Of the three Radiation Oncologists he spoke with, one was Dr. Glenn Tonnesen at Inova Fairfax Hospital Cancer Center in Virginia. It was at that point that Dr. Tonnesen explained the difference between TomoTherapy® radiation treatments and other forms of intensity-modulated radiation therapy (IMRT).
“I explained to Mike that there are lots of linear accelerators doing IMRT that just weren’t designed to do it,” says Dr. Tonnesen. “The only machine designed from the ground up to do IMRT is TomoTherapy. So, if you want to sculpt the dose and aim at one thing and miss another there is no other option. I think that’s what appealed to Mike—that this was a purposeful machine designed to do exactly what he wanted.”
While impressed, Mike still was not convinced and took the meeting with Dr. Tonnesen as food for thought. He also met with other radiation oncologists, one of whom he particularly felt comfortable with and who treated at a cancer center very close to his home.
“I developed a strong understanding of my options, then I started asking other people in the medical industry, ‘Would you go five minutes away for conventional IMRT or an hour away for TomoTherapy?’ The answer was a resounding ‘yes,’ go for TomoTherapy.”
After choosing TomoTherapy treatments, Mike called up the Radiation Oncologist closest to his home to break the news. “He was initially disappointed that I had chosen another path, but about five minutes after I hung up with him, he called me back and said, ‘look, to be honest with you if I were in your shoes, I’d go for TomoTherapy treatment, too.” Mike says this candid, personal opinion from a trusted doctor helped him know he had made the right choice.
The smiles say it all as life gets back to normal for the Schafer family.
“Mike was a good candidate for TomoTherapy because he had disease only on one side of his tongue and neck,” says Dr. Tonnesen. “Therefore, we wanted to treat the areas of high risk and skip the rest.”
He continued to explain that avoiding the salivary glands and spinal cord, and preserving Mike’s ability to easily taste and swallow, were very important. “Mike was clearly someone who should have IMRT and TomoTherapy is the best way to do IMRT,” Dr. Tonnesen says matter-of-factly.
Mike received 35 fractions during his radiation treatment on the TomoTherapy Hi·Art® treatment system. That meant he drove to Inova Fairfax, about an hour each way, for 7 weeks.
A daily CT, or CTrue™, image was taken before each treatment to make sure Mike was lined up as precisely as possible. Mike says the extra time lying on the table for the CT was not a big deal and became par for the course.
Dr. Tonnesen validates that it was time well spent: “We do a daily CT on every patient treated with TomoTherapy. Since we’ve started using TomoTherapy’s daily CT, we have learned that our set-ups were not nearly as precise as we thought they were by just using masks, lasers and skin marks. As carefully as we try to set patients up, the daily CT usually shows they need to be moved millimeters on average everyday.”
Mike says that he did lose his taste during the treatment process and any taste that he had was bad. “You dread eating and that is compounded by the fact that you need more calories and protein than you would need as a healthy person.”
Mike says his taste is now 90% back to normal. A lingering side effect is a bit of dry mouth while eating, but water helps with that. While Mike says it’s hard to compare his treatment experience to others treated on more conventional machines, he is convinced that he fared better than many people he met in his support group.
“I’ve heard from others who have had terrible dry mouth for years afterwards. While I had some mouth sores during the process, I know of others whose mouths were so inflamed that even drinking was horrible. They’ve told me their skin was burned. I didn’t experience that, just some mild redness was the extent of it.”
Mike says he had heavy mucous as the treatments wore on, but it was gone a week after treatment. “One gentleman I spoke with still has to deal with that heavy mucous years after treatment.”
Mike sums it up by saying, “I can infer from my experience with radiation and how I tolerated it versus others who went through other types of radiation, that I made the best decision with my treatment choice. A lot of people have to wait a year before returning to work and I was back in six weeks.”
In addition to radiation therapy, Mike’s treatment regimen was rounded out by Erbitux—a promising new immunotherapy drug.
Through it all, Mike found the time to document his experience on a detailed blog titled ‘My Cancer Fight.’
With his blog, Mike was able to combine his love of technology, reading and his willingness to share the experience.
“When I first was going through this, there wasn’t anything out there to walk me through the experience step-by-step,” he says. “Writing my blog was a therapeutic effort for me. And, really, it’s hard not to want to help other people. I guess some people would want to put the experience in a box and forget about it, but I think that for most people, an experience like cancer compels them to look at life differently and become much more altruistic.”
When asked what else he likes to do in his spare time, Mike laughs, “Well, my 5½-year-old son takes up 80% of our time… Mason keeps us very busy. He plays soccer, tried football for the first time last fall and just started t-ball this spring.”
With what little time is left over, Mike does his best to follow the Maryland Terrapins basketball and football teams.
Mike eyes the future with a new appreciation for life.
While Mike will be closely monitored with 6 month check ups and PET scans, he is doing well so far. “I remind myself that it’s a 5-year deal for me to really feel good about being cancer-free.”
If attitude is any indication, Mike is already one step ahead of the game. Dr. Tonnesen says, “He made it easy to take care of him. Even when he was miserable he was nice about it.”
Through his entire experience, one seemingly innocent comment still stands out in Mike’s mind. “When I first sat down to talk to Dr. Tonnesen, he said, ‘Trust me, you’ll remember me when you’re an old man.’ I took that as validation that I would—in fact—live to be an old man someday.”
