Bridging the Gaps for Head and Neck Cancer Patients

01/29/2007 MADISON - At a recent checkup at the UW Paul P. Carbone Comprehensive Cancer Center, David McMahon was feeling a little down. He wore a smile on his face and his radiation and chemotherapy treatment for tonsil cancer has been going well, but a few setbacks were bothering the 47-year-old ship builder from Menominee, Mich.

Since his treatment is affecting his ability to swallow, he's been having trouble getting food down. And even though McMahon would like to gain back some of the weight he's lost during treatment, he's struggling just to maintain his 155-pound frame.

Suggesting pain medications to help ease the rawness in his throat, McMahon's oncologist explains why swallowing has grown more difficult as he continues through treatment.

"It's like the inside of your throat is getting a really tough sunburn," explains Anne Traynor, MD.

"You're doing a great job with everything," Traynor adds. "The key here is just plugging at it and keeping going."

After reassuring McMahon that everything he's experiencing is normal, Dr. Traynor then chats with him for a few minutes, wishes him well and leaves the room.

This was just the first stop on David McMahon's roller coaster ride for the day. Before the day is over, McMahon will interact with several other physicians, nurses and therapists. He'll also undergo chemotherapy and radiation treatments later that afternoon.

"There's definitely a lot going on," says McMahon, adding that he often feels overwhelmed by it all. "It's hard to keep track of everything."

That's where Peggy Wiederholt comes in to save the day, McMahon says with a smile. As head and neck oncology nurse coordinator at the UW Carbone Cancer Center, Wiederholt's unique job is to essentially act as the hub in what can be a very complex, multi-spoked wheel for head and neck cancer patients to negotiate.

"Peggy's just great. She's done a lot for us so far," McMahon says of Wiederholt, adding that she's also been a great comfort to his wife, Lynette. The McMahons have been traveling from the Upper Peninsula to Madison each week, living in a hotel on weekdays while David receives specialized tomotherapy treatment that's not available closer to home.

"It's tough," McMahon admits. "But it would have been a lot harder without Peggy."

Head and neck cancer - unique treatment and challenges

The nature of head and neck cancer (HNC) is such that patients with advanced disease often must undergo complex treatments by a team of multidisciplinary specialists, each providing expertise in different areas.

With this type of comprehensive approach, treatment may involve surgery, radiation, chemotherapy or a combination of therapies - which often carries significant side effects and high toxicity. Adverse effects include pain, nausea, swallowing problems, weight loss, malnutrition and dehydration.

Likewise, the structures of the head and neck may change due to surgical treatments, potentially leading to functional problems involving breathing and swallowing, as well as cosmetic disfigurement.

When a patient is seen in multiple clinics by different specialists, Wiederholt is there to bridge the gaps - to make sure the care is coordinated across health care teams, to ensure that patients understand everything that's happening to them, and to offer appropriate resources when patients need help.

"When you receive a diagnosis of head and neck cancer, it can be an intimidating experience," says Wiederholt. "You're overwhelmed with first the diagnosis, and then all of the testing, the procedures, the information, and all of the different people you need to meet with."

For patients, it's an emotional roller coaster compounded by having to navigate through an often confusing health care system and enduring hours of appointments, tests and disease-oriented discussions that may lead to information overload and stress, Wiederholt says.

A comforting presence

As head and neck oncology nurse coordinator, Wiederholt serves as a case manager to assess patient needs, assist with symptom management and provide education and support for patients and their families in otolaryngology, radiation oncology and medical oncology.

As patients bounce from doctor to doctor and from clinic to clinic, Wiederholt often goes with them to channel the communication, both from doctor to patient and across health care teams.

"I provide another set of ears for the patient, so that as the patient is trying to absorb all of this information, I can re-present what each physician has said," Wiederholt explains. "Number one, patients want to make sure they're hearing everything correctly. And number two, they're frightened, and they feel a little sense of comfort in having someone else there."

With a bright smile, a warm greeting and a reassuring hand on the shoulder, Wiederholt offers both a friendly social visit as well as a vital needs assessment - making sure patients' needs are being met with regard to pain, nutrition and a host of other factors.

"I spend a lot of time talking with patients and even more time listening to patients," Wiederholt says. "Sometimes the most important thing I do in a room is listen to patients and provide them with some support, and some days maybe the most important thing I did with that patient was give them a hug."

Tucked away in Wiederholt's file cabinet are folders full of heartfelt cards and notes from her patients - keepsakes that she takes out on difficult days for a boost.

"They remind me why I am doing this," Wiederholt says.

Gaining strength from personal tragedy

But perhaps her strongest motivation lies within her own heart. In 1994, Wiederholt's husband Joe was diagnosed with colon cancer, just a few years after Peggy's father died of the same disease. For the first time in his adult life, Joe Wiederholt, a member of the faculty at the UW School of Pharmacy, was hospitalized.

Together, Joe and Peggy began a long journey that would eventually lead to Joe's death in 2001.

Partners in every sense of the word, Peggy has continued to publish a book Joe created during his cancer treatment. "The WriteTrack: Personal Health Tracker for Cancer Patients" helps others through their own arduous cancer journeys.

In addition to the book, Peggy views her continuing work with head and neck cancer patients as therapeutic, helping her feel as though she's fighting back after losing her husband, both parents and other loved ones to cancer.

"I think having walked in the shoes of these patients' families, I know what it is to be on the other side," Wiederholt said. "I have firsthand experience with what it is like to be with your loved one in the clinic - in multiple clinics - in chemotherapy, in radiation, in clinical trials, on the inpatient unit, in hospice care… I think I have become a much, much more compassionate and empathetic person, and I think I've become a better patient advocate because of my personal experiences."

"I feel - I hope - that I'm making a difference this way," Wiederholt adds.

Her patients certainly think so.

When Marshall Flax was undergoing tonsil cancer treatment in 2003, he was admitted to the hospital a couple of times when he became particularly ill. Even on weekends, Wiederholt would stop by his hospital room to check on him and ask if everything was going OK.

"Without her even saying it, it became clear to us - this is the woman to go to when you need something," says Flax.

After Randy Eggert finished treatment for tonsil cancer, he was understandably nervous whenever he would feel something questionable in his throat.

"I could just call Peggy and she'd either help me get an appointment quickly, or she'd always be there to answer questions," Eggert said. "I just think that if you went to another hospital, you wouldn't get this kind of specialized treatment or expertise. I just think it's great to have these kinds of resources right here in Madison."

Wiederholt stresses that she is just one person on a team that's dedicated to providing the best possible care for head and neck cancer patients.

"I can't begin to tell you what a privilege it is to work with such a talented and caring multidisciplinary team," Wiederholt says. "Our head and neck cancer program is certainly among the very best in the nation. In my opinion, it is number one."