Helping cancer patients put their best face forward

Jana Rieger helps head and neck cancer patients live better

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Dr. Jana Rieger, director of research at the Institute for Reconstructive Sciences in Medicine (iRSM) in Edmonton’s Misericordia Hospital
Photo by Amy Senecal

Dr. Jana Rieger is having a Hamlet moment. She stands, one arm outstretched, cradling a model of a human skull in her palm, unconsciously mimicking the pose of the tragic Shakespearean Dane. At any moment you almost expect her to break into iambic pentameter starting with: “Alas poor Yorick!”

But this isn’t a rehearsal hall and Rieger isn’t an actor, she’s the director of research at the Institute for Reconstructive Sciences in Medicine (iRSM) in Edmonton’s Misericordia Hospital. So when she speaks, her words are more surprising than Hamlet’s.

“If there’s anything I hope my research does, it’s to reduce the negative impact on patients’ quality of life.”

“Here in our Medical Modeling Research Laboratory, we can create a replica of a patient’s skull – and this ‘patient’ just happens to be me.” Rieger gestures toward shelves where other eyeless skulls stare back, then points to one ghostly white form near the end of a row of mannequin-style heads. “That one’s me too,” she says with a slight smile. “I think everyone who works in this lab is getting tired of me staring at them.”

There are more marvels on the shelves behind the glass, notably computer-generated facial plastic “skin,” remarkably realistic in its look and feel, and custom-made templates that surgeons use as guides for reconstructing jawbones. It’s all made possible by a combination of advanced imaging technology such as CT scans, computer modelling and 3-D printing.

These innovations will make a world of difference to patients who lose sections of their skull or face to head and neck cancers. At iRSM, patients are also treated for congenital abnormalities due to trauma, but Rieger says that about 80 per cent require treatment due to cancer. After life-saving treatment, many patients require reconstructive surgery to restore their appearance and the essential functions that most of us consider natural, like the ability to speak well enough to be understood, to chew well enough to eat more than mush and to do something as reflexive as swallowing. Patients who lose parts of their mouth or tongue lose that ability; for some drinking a glass of water comes with the fear of aspiration and possible pneumonia.

“The social impact of cancers that affect the head and neck is huge,” says Rieger. “If there’s anything I hope my research does, it’s to reduce the negative impact on patients’ quality of life. When patients can’t eat or speak normally, it’s so very traumatic. They lose their jobs, families break apart; people become isolated and go rapidly downhill. We’ve been naïve in our treatment of these patients; we really need to get better at getting them get back to normal.”

When Rieger first arrived at iRSM in 1999 as the program director of head and neck functional outcomes, she admits she wasn’t even knowledgeable enough to be called naïve. Although she had a new PhD behind her name, earned at University of Alberta over five years for research in rehabilitation science, she had no idea what treatments worked best. “I was a speech pathologist, but had no experience in head and neck cancers. Yet I absolutely knew I wanted the position. The program was new and undeveloped.”

Rieger says it didn’t take her long to see there was a gap between what the literature and post-surgery reports said and what she observed in head and neck cancer patients. “I’d read how patients were doing great and had recovered speech. But what I heard was far from normal speech, sometimes barely understandable. Why should that result be considered as good enough?”

Head and neck cancers are ruthless, with a survival rate of barely 50 per cent. Consequently many physicians defined success as survival. But Rieger saw and treated survival daily as a clinician and researcher. If more could be done, the patients deserved more. And if this was as good as they could be, post-surgery, maybe new surgeries with better outcomes were needed.

Rieger knew that first she needed to define the problem. As all good researchers know, you do that by looking at numbers, measuring and re-measuring, tracking and comparing changes (or lack of changes) over time and analyzing the data. Yet as Hamlet himself would say: “Ay, there’s the rub.” Objective numbers didn’t exist.

“Once a surgery of this type is done, it can’t be undone. The results are so much better when measurements are done in advance and the surgery is preplanned.”

Because little thought had been given to gathering data, there were no standards or benchmarks. Evaluations were subjective; one doctor’s “good” might be another’s “fair.” And since many of the functions related to speech, chewing and swallowing are not easily observed, there was no consensus on what should be measured or how. And researchers couldn’t rely on most patients to accurately describe how they felt, because they simply didn’t know. Surgery left many numb, without nerve sensations or awareness of what their muscles were doing.

Rieger opens the door of a small room to reveal her solution – a lab filled with large machines. “This was a broom closet when I came here, but now we use machines like this mobile swallow station to measure what’s really going on. We can actually see on a screen what happens as patients swallow.” One machine measures air flow and pressure, another measures sound.

Slowly but surely, patient by patient, Rieger built a database of objective measurements. These data became the touchstones of her research, a scientifically-valid reference point that provided feedback to surgeons. Working collaboratively, they began testing creative new techniques, constantly revising, adjusting and getting better.

“Our surgeons have now developed a reconstruction technique that works perfectly for the patients. And it was all made possible because we used measurements from these machines to guide us,” Rieger says.

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“Alas poor Yorick!”
Photo by Amy Senecal

She holds up two skull models from the same patient to demonstrate how measurements can affect a patient’s outcome. Both were created by the same skilled surgeon to reconstruct a new lower jaw from the patient’s own fibula (a bone in the leg). For the first skull model, the surgeon worked freehand, relying on experience and what was revealed during the surgery. On the second, a template was created before surgery using the measurements and 3-D imaging from the patient’s (soon-to-be removed) jaw.

Because all details are pre-planned when a template is used, the surgery goes much faster, giving better outcomes. But the real difference is what’s visible to the naked eye. The first skull model of the poor “patient” who hypothetically received the freehand surgery reveals a serious under bite. The jaws can’t possibly meet, and dental implants would be impossible. The second jawbone, created with the aid of the premeasured template shows a beautiful, functional jaw.

“Once a surgery of this type is done, it can’t be undone,” Rieger notes. “The results are so much better when measurements are done in advance and the surgery is preplanned.” This method has become the new normal.

After a two-year leave, Rieger returned to iRSM in July 2013 as its research director. Although she continues her own research projects, she now oversees work of the department as a whole. One of the areas she’s most excited about is the possibility of regenerative medicine using stem cells from a patient’s own body. Instead of taking skin from a patient’s arm or fibula bone to replace tissue and bone lost to cancer, stem cells might be generated in the lab from the patient’s own cells.

Just a few years ago, this idea sounded like a sci-fi dream, but it’s now one step closer to reality. The machine Rieger’s group hopes will make it possible is a highly advanced piece of technology called a 3-D Bioplotter, iRSM’s quarter-million-dollar investment in the future. One of only a few in Canada, it sits ensconced in its own glassed-in environment in the Medical Modeling Research Lab.

Rieger is now in what she calls the second phase of her research. Initially she needed to gather data; now she’s looking at innovative ways to use technology for post-operative treatment. She and her colleagues have tested a plastic mold that gives patients immediate feedback on how well they’re swallowing or moving their tongues via a computer screen. Its appearance is similar to a dental mold, but the plastic form that fits over the teeth, tongue and mouth is implanted with many sensors. These relay data to a computer screen as the patient performs speech or swallowing exercises.

Results have been encouraging, but the downside of this therapy is it’s time- and labour-intensive for both patient and therapist. Generally, daily sessions are required over several months, under supervision of a speech therapist.

Rieger has always looked to technology to overcome barriers and she’s about to launch research into her new solution. It’s a portable unit that will communicate wirelessly with a mobile tablet device. As the patient engages in exercises – from any location in Alberta – bars, graphs and visual images will appear onscreen to provide feedback.

A therapist can remotely access the device.

“We’ve found patients are very interested in these devices,” says Rieger. “They’re portable and adaptable to lifestyle, but what they really love about the idea is the immediate feedback presented in a visually engaging manner. The device takes on the role of a personal coach, much like the FitBit device for fitness training.”

The Alberta Cancer Foundation is looking forward to seeing those results. Rieger’s novel idea will be tested on patients, thanks to a $1.9 million investment, part of the Foundation’s new Transformative Programs competition. This competition put scientists through a rigorous process that included a review panel made up of national researchers, informed patients and stakeholders from the business community. The Foundation asked for bold ideas that would have a direct impact on Albertans facing cancer and Rieger’s portable unit is one of those exciting initiatives that will improve the quality of life for head and neck cancer patients.

When iRSM was established in 1993, some wondered whether its specialized services were actually needed. Would there be enough patients to justify the space and dedicated staff? Now, while Rieger talks about future research she’d like to pursue, the halls ring with the sounds of hammers and pneumatic drills: iRSM is expanding, as a former cafeteria is converted to fill the needs of patients across Alberta and Canada.

“I started the conversation about whether we’d really done enough for the survivors of head and neck defects and the medical community has really embraced the new mission of doing more,” Rieger concludes. “Of course the first focus will always be a cure. But now we all understand that’s just the start. After their treatment, after they survive, we must do our best to give patients back as much of their lives as possible.”

Q and A with Dr. Jana Rieger

Stereotypes persist about researchers – they’re pale from spending too much time indoors in labs, they never step away from their computers, they’re intense. What do you do off-hours that might surprise people?
I box! I have a mannequin named Bob in the basement, whom I like to punch. It’s something I always wanted to try and I took a course about a year ago. It’s a great work-out and now I want to work with a personal coach.

I’ve also travelled extensively, both as part of my job and on my holidays. I speak frequently at conferences and I’m up to something like 60 events in more than 10 countries.

I got into scuba diving. I have my open water certification and some of my favourite dives have been in Belize, Cuba and Hawaii. I’ve even done a night dive in Honduras, rolling out of a boat into the black ocean with a flashlight.

You’re very open about your research projects and share your results widely with an international network. But I hear you have a “secret project” that’s ready to go public?
I’ve been working on a novel for years. Up to about Draft 252 now (just kidding!). I won awards and was long-listed for its earlier drafts, so that’s kept me going.

It’s a medical mystery thriller, set in Edmonton and the main character is a medical researcher. But she’s not me – she’s a feisty redhead. I’ve drawn on my experiences for it, but it’s not directly based on anyone from my real life. Well, except my dog Max, a five-year-old 60-pound standard schnauzer. He’s in it, under a pseudonym. I’ve always felt like I should hide it because I don’t want anyone I work with to think it’s about them. But it’s just about ready to share. I won’t reveal the plot – yes, there is a murder. It looks at the ethics of medical research and what the pressures placed on researchers can drive them to do.

As a writer, do you have any good reads to recommend?
Most recently I’ve really enjoyed The Burgess Boys by Elizabeth Strout. I’m also halfway through Dance, Gladys, Dance, a novel by Cassie Stocks published by an Edmonton printing house. She won the 2013 Leacock Award for it and it’s very funny. I also enjoy local writers like Todd Babiak and Hellgoing – Lynn Coady’s latest book that won her the 2013 Giller Prize – is on my must-read list.

4 Responses to Helping cancer patients put their best face forward

  1. Wayne Reimer says:

    I am an 8 year survivor of head & neck cancer, and although I had a really good result post treatment, I’m now struggling a great deal with long term negative effects of treatment (the biggest being resorption and likely failure in the near future of the fibular graft that makes up my jaw). Reading this renews some hope for me that my future may hold something better than a feeding tube.
    Almost no one who has not experienced this cancer as a patient truly “gets it”. The first part of you a stranger sees is your face…what if your face is horribly disfigured, and your speech distorted? What is there first impression then? First surviving an enormous struggle, only to find yourself in crushing depression due to the treatment. I’ll be following Dr. Rieger’s research closely

  2. JOHN TUCKEER says:

    HELLO JANA! IWAS ONE OF YOU PATIENTS ABOUT 8 YEARSAGO AND AM ENJOYING LIFE AND STILL KICKING THANKS TO YOUR AND dR wOLFHARDT GOOD WORKS. PLEASE KEEP IT UP

  3. Jana Rieger says:

    Dear Wayne,
    Thank you for your thoughtful comments on what it’s like to experience this cancer. It’s important to raise awareness about head and neck cancer and one of the best ways to do that is for others to hear from people like you who have been through it because you are the one who truly “gets it” and who can tell the story best.
    I’ll be happy to share our progress with you anytime.
    Sincerely,
    Jana

  4. Jana Rieger says:

    Dear John,
    So great to hear from you! Keep kicking and do stay in touch!
    Sincerely,
    Jana

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