Ridding the body of cancer is the primary goal of most cancer treatments, but it’s only one part of the journey. From the point of diagnosis until a patient is able to return to his or her life and activities, there’s another long-term objective to work towards: restoration. And with increased survival rates, improving post-cancer quality of life is becoming a major focus for professionals throughout the field, side-by-side with finding the cure.
Illustration by Heff O’reilly
“With people living longer, there needs to be a huge focus on the rehabilitation portion,” says Linda Kempster, physical therapy co-ordinator for inpatient surgery at the University of Alberta Hospital. A focus on restoration means considering a patient’s outcome in terms of physical appearance and their ability to move and function. From improved surgical techniques and specialized physical therapy to advanced reconstruction, prosthetics and new research into self-care options, there’s a growing drive to get patients back to a “new normal” from the very beginning.
Every cancer presents its own set of challenges, but some of the most difficult to overcome in terms of restoration are the challenges of head and neck cancer patients. The sixth most common type of cancer worldwide, head and neck cancer requires a multidisciplinary team and an aggressive treatment that can drastically alter a patient’s appearance and change his or her ability to eat, speak and hear. According to Dr. Hadi Seikaly, professor in the departments of surgery and oncology at the University of Alberta (and divisional director and zone section head for otolaryngology head and neck surgery for Alberta Health Services) the aftereffects of head and neck cancer can be nearly as difficult for a patient to cope with as the cancer itself. “We can cure these patients with surgery; we can cure them with high-dose radiation and chemotherapy. However, all of these treatments could potentially result in devastating deficits,” Seikaly explains. “If someone is missing half of their jaw and half of their tongue, yes, they’re cured but, really, what kind of cure is that?”
It’s in optimizing restoration through the initial surgery that Seikaly and his colleagues at the U of A’s ear, nose and throat program are making huge advances. Seikaly was educated at the University of Toronto and completed his residency at the U of A before heading to Texas for advanced training in head and neck cancer treatment and reconstruction. He brought his skills back to Edmonton in 1996, and his arrival changed the way head and neck cancer is treated at the U of A. Now the magnitude and complexity of the surgeries in Edmonton draws patients from across the country. “It was a paradigm shift from just fixing them at all costs,” Seikaly explains of the approach. “We now fix them at all costs, but we also want to bring them back to real life.”
Rather than simply removing the cancer and stitching the patient up, Seikaly has initiated a method that brings restoration to the forefront of surgical treatment. These complex surgeries regularly run 16 hours or even longer, and are done in shifts by two teams: one that resects the cancer and another that rebuilds the patient. Depending on the location of the cancer, these advanced reconstructive surgeries can include anything from building a new ear, to harvesting bone and making a new jaw complete with its own blood supply, to inserting bone-integrated implants to accommodate future detachable prosthetics, such as teeth.
In the Seikaly-Jha procedure (Seikaly pioneered this treatment several years ago with Dr. Naresh Jha), surgeons can move a patient’s submandibular saliva gland(s) to another location in the mouth to keep them out of the radiation field, saving patients from the lifelong dry mouth and tooth decay they’d experience otherwise. And for patients who undergo laryngectomies, surgeons can perform a trachea-esophageal puncture to accommodate a voice prosthesis later on. “These surgeons are absolutely amazing. They literally almost have to peel the whole face back to resect some of these tumours, and they put the person back together like a puzzle,” says Kempster.
She should know. Kempster has been at the U of A since 1995, and her team of physiotherapists represents some of the first people who see head and neck cancer patients post-surgery. Early mobilization has led to faster and better healing, so Kempster does what she can to get the patients active from the first day, running them through range of motion and light strengthening exercises over the course of their hospital stay.
Sometimes ICU physical therapists even get patients out of bed even while they’re still on ventilators. After four to six weeks, many patients head to the Cross Cancer Institute to begin radiation therapy or a combination of radiation and chemotherapy. There, they’ll start new, more intensive physiotherapy regimens with the physiotherapy team at the Cross in order to maintain or improve mobility and function and prevent common issues such as lockjaw, drooping shoulders and stiffness.
Just as physical therapy advances have helped to optimize restoration, advances in reconstruction have also had a positive impact on getting patients back to their everyday lives. Edmonton’s Institute for Reconstructive Sciences in Medicine, based at the Misericordia Hospital, has become a leader in helping patients whose physicality has been altered. A world-class facility, the institute offers clinical care in the form of case management, treatment planning, rehabilitation and continuing care services for patients, including those with head and neck cancers. Surgeons like Seikaly work in close partnership with iRSM to design better procedures, planning and practicing complex surgeries step-by-step on computer models as well as inserting implants during surgery to make the transition to prosthetics as seamless as possible. When it’s not possible for a surgeon to reconstruct using a patient’s own tissues, iRSM crafts missing features with synthetic materials such as acrylic or silicone. Technicians, some with training in art and engineering, tailor these detachable prostheses to match a patient’s anatomy and skin tone.
But even with these advances, many patients still experience aftereffects that last the rest of their lives. For head and neck cancer patients, difficulty opening one’s mouth or shoulder stiffness and, for breast cancer patients, lymphedema or the swelling of one’s arms, can mean pain, social stigma, and difficulty with the most basic tasks, such as chewing or putting on clothes. Researchers, such as physical therapist Dr. Margaret McNeely, are actively searching for ways to ease these problems and improve restoration.
McNeely has a joint appointment in the U of A’s department of radiation oncology and as a clinical researcher in the rehabilitation medicine department of the Cross Cancer Institute. A former clinician, her research has resulted in immediate changes in practice. A study she conducted on patients who sustained nerve damage to the trapezius muscle during cancer surgery showed that early intervention drastically minimizes shoulder stiffness down the road. Since the study’s publication in 2004, physiotherapists have started to work the shoulder in these patients as a preventative measure with much success.
In many cases, McNeely’s research has focused on self-care techniques. “Patients like to be a partner in their recovery, and also to have hope that this is not how they’re going to stay in the long-term,” she says. In a feasibility study that wrapped up in February, McNeely looked at various commercial nighttime compression garments available for breast cancer patients with lymphedema. These garments are an alternative to nighttime compression bandages, which not only require specialized skill to wrap properly but take approximately 20 to 30 minutes to apply. Next, she will gather evidence about the effectiveness of such garments. Without hard data, they’re not covered by health insurance so they’re prohibitively expensive for many lymphedema sufferers.
Similarly, McNeely is researching the effectiveness of commercial stretching devices for the self-management of patients with jaw stiffness from surgery or radiation therapy. The devices, which can cost thousands of dollars, allow patients to take a bigger role in their recovery by supplementing their physical therapy with home stretching rather than relying solely on outpatient services which the health-care system can’t always support for the duration patients need it. But without evidence proving they work, the devices aren’t covered by insurance and remain beyond the reach of most patients.
McNeely is also looking at different methods of early detection for lymphedema in breast cancer patients, including taking baseline measurements before treatment; using a perometer, which assesses limb volume; and using a bioimpedance device, which measures the fluid volume in tissue. By monitoring those patients who are at higher risk, it’s possible to treat them before lymphedema becomes a chronic condition and lifelong burden for a patient.
The path to restoration is being cleared by the initiatives of professionals like McNeely, Kempster and Seikaly. According to Seikaly, the survival rate for head and neck cancer patients has increased in the past decade from around 25 per cent to 70 or 80 per cent. And of those survivors, 80 per cent are now able to return to work, thanks in no small part to the restoration-focused reconstructive and therapeutic advances. And there’s still much more work underway improving post-cancer quality of life. New approaches, such as the use of robots for tumour removal, are proving more effective and less invasive. “We’re still evolving. We’re still trying to make things better and better,” Seikaly says. And for patients, that means looking forward to a more effective restoration and a higher quality of life.
MEET JOE’S TEAM: A triathlon and a run/bike duathlon, Joe’s Team raises money in support of head and neck cancer research, benefiting the Alberta Cancer Foundation. This year’s event is in Calgary on Saturday, June 15, 2013.
Find out more at albertacancer.ca/joesteam