Libby's Story: Orthopedic Oncology Program Tackles Musculoskeletal Tumors
MADISON - Libby Falck was five years old when she started feeling pain in her right leg. Her parents initially wrote it off to growing pains - until Libby fell while playing on the Slip N' Slide in her aunt's backyard. And as easy as that, her leg snapped and broke.
After two biopsies at UW Children's Hospital in Madison, Libby was diagnosed with Ewing sarcoma, a type of cancer that occurs primarily in the bone or soft tissue. Immediately undergoing chemotherapy and radiation treatment, Libby had surgery to strengthen her leg a few years later - and life for the Neenah girl appeared to return to normal.
But at age 13 - seven years after her first remission - Libby felt the familiar bone pain again in her right leg.
The cancer had returned. And this time around, the young teen spent nearly two years in a wheelchair after UW Health orthopedic surgeon John Heiner resected the mid-shaft of her diseased femur bone and replaced it with an allograft, which involves donor tissue from a cadaver.
Her first day of high school was a memorable one. Bald from chemotherapy and wheelchair-bound, Libby also had poison ivy, which her radiation-weakened skin contracted after she wheeled herself into the bushes to retrieve a ball she had thrown to her dog.
"I was just a mess," said Libby at age 19, able to now look back and laugh about the experience. And though she has a long scar on her right leg from seven or eight surgeries over the years, Libby considers herself lucky to be able to walk and function relatively normally.
In fact, about 14 years after first meeting Dr. Heiner, the UW-Madison sophomore was back in his office one recent morning, asking for a leg brace for kayaking.
"I've been kayaking since I was 12 - I love it," Libby says. "I still can't run very well, but my leg's pretty good for doing everything else."
"I even try dancing. I'm really pretty bad at it, but it's fun, so I just do it, anyway," Libby adds with a laugh.
Salvaging Limbs and Function
With patients like Libby, the whole idea behind treatment is to try and save the leg, says Dr. Heiner.
"And not only that, but we wanted to preserve the function of her leg," Dr. Heiner said. "She's a young person with a lot ahead of her."
Saving the limb wasn't always possible in sarcoma patients. In fact, prior to the mid- to late-1980s, sarcoma surgery generally consisted of massive amputations to remove diseased bone and tissue. Twenty years ago, a patient like Libby would have probably had her leg amputated at the pelvis.
"Now, with new combinations of chemotherapy and radiation, the vast majority of sarcoma patients can have their legs or arms saved," says Dr. Heiner, who works collaboratively with the University of Wisconsin Paul P. Carbone Comprehensive Cancer Center to treat musculoskeletal tumors in children and adults.
Bone tumors tend to be more complicated to treat surgically than soft tissue tumors, because the surgeon must reconstruct the skeleton after removing the diseased bone. Bone tumors also tend to be quite large - often longer than 12 centimeters, or even up to 25 or 30 centimeters in the most complicated cases.
Why so large? In many cases, people with soft tissue tumors tend to ignore the pain, or write it off to other reasons - so their physicians may not immediately X-ray for them. With bone tumors, people often attribute their pain symptoms to injuries.
"They might think it's just hurting because they banged it up playing basketball or something," Dr. Heiner says. "But bone tumors tend to spread fairly quickly - by the time the patient comes in, three-quarters of their femur may already be involved."
The Musculoskeletal Oncology Team
Primary care physicians refer patients from all over the region to Dr. Heiner, who then works with those doctors to develop treatment plans that may include radiation, surgery, medication, chemotherapy, or a combination of therapies catered to the location and type of tumor.
Dr. Heiner is among a small handful of surgeons in Wisconsin with expertise in musculoskeletal oncology. While many patients referred to him receive the bulk of their care at home from their primary doctor, Dr. Heiner is often sought out to perform the highly specialized surgeries and related treatment.
Working with UW Carbone Cancer Center researchers and cancer specialists, Dr. Heiner and the multidisciplinary musculoskeletal oncology team offer sarcoma patients innovative methods of delivering radiation, designed to shrink the tumors prior to attempting surgical removal.
"The smaller we can make a tumor prior to resecting it, the less tissue we have to take out with it - and therefore, the better the chance that we can save the limb," Dr. Heiner explains.
Team members also include Howard Bailey, MD, an adult oncologist; pediatric oncologists Carol Diamond, MD and Margo Hoover-Regan, MD, and radiation oncologist Steven Howard, MD.
"There's a whole team here that all works together on this, and I think we provide state-of-the-art care in all aspects of this management," says Dr. Heiner.
In addition to bone tumor patients like Libby Falck, the musculoskeletal oncology team also treats patients who have had other types of cancer that has metastasized, or spread, to the bones. Cancers most likely to spread to bone include cancer of the breast, prostate, lung, kidney and thyroid.
In Libby's case, the prognosis is good. And with her new leg brace, she's spending a lot of time kayaking this summer.
"It looks like we're in business - everything looks solid as a rock," Dr. Heiner told Libby while reviewing recent X-rays with her.
For Dr. Heiner, it's gratifying to follow up with patients so many years after their initial treatment.
"It's pretty cool - over the years of doing this, you're able to follow up with the patients when they wander in for their annual or every other year appointment," Dr. Heiner says. "They've had kids and they've done a lot of other great things with their lives."
In Libby's case, it's likely that many great things lie ahead. In high school, Libby founded "Teens Tackling Cancer," a teen-run organization for young cancer patients and survivors. She's now studying media production at UW-Madison and in the planning stages of making a documentary to help young, newly-diagnosed cancer patients navigate through emotional, unfamiliar territory.
"People think being a teenager with cancer is such a horrible thing - with everyone looking at you differently and not really seeing who you are," Libby says. "But you just learn to take it one day at a time."