When 10-year-old Elise Robinson felt pain in her right knee three years ago, her pediatrician thought it was growing pains.
But the pain persisted, so Elise and her parents visited an orthopedic surgeon.
Scans revealed a tumor in her right tibia, the larger of the two bones between the knee and the ankle. A biopsy confirmed the tumor was an osteosarcoma – the most common type of bone cancer in children.
Elise and her family made their way to the MD Anderson Children’s Cancer Hospital, where they met orthopedic oncologist Valerae O. Lewis, M.D. Lewis proposed a procedure called rotationplasty to remove Elise’s cancer while preserving her mobility.
To perform the procedure, surgeons remove the upper portion of the leg, the knee and several inches below the knee to ensure all cancer cells are excised.
Then they rotate the remaining portion of the lower leg 180 degrees and attach it to what’s left of the upper leg. The rotated foot is now on the same plane where the knee used to be, with the toes pointing backward and the heel facing frontward.
“In this rotated position, the ankle acts like a new knee joint,” says Lewis, chair of Orthopaedic Oncology.
The foot fits down into a prosthetic leg.
Essentially it turns an above-the-knee amputation into a below-the-knee amputation and affords the patient better control, function and mobility.
“The aim of the surgery is to offer patients the best possible functionality,” Lewis says.
“Most patients eventually will be able to walk unaided and return to the sport of their choice.”
Elise’s mom, Jennifer, at first was hesitant to agree to rotationplasty.
“I was concerned about how people would react if they saw Elise without her prosthesis,” says Jennifer. “I thought about the stares and questions from friends and family, and especially strangers.”
Elise, however, wanted to give it a try. She likes playing sports, and rotationplasty would allow her to remain active.
“Most sports are possible, Lewis says, “especially those where knee motion is important, such as bicycling, skating and soccer.”
Only 35 cases of this tumor type have ever been documented, and Kylie is one of the youngest patients ever.
Paul Gidley, M.D.
Skull base tumor surgeon
On the back of Alicia Bennett’s favorite T-shirt is her design of a tree with the words, “Go out on a limb.”
The shirt honors the 17-hour cancer operation that removed the 23-year-old college student’s watermelon-sized tumor, along with her right arm and breast, chest wall, sternum and six ribs.
“I use lots of humor to cope,” says Alicia, who has been coping with a desmoid tumor – a type of soft tissue sarcoma – since she was 16.
Repeated desmoid tumor recurrences
Alicia’s local New Hampshire doctor first diagnosed her with a benign, slow-growing tumor near her right arm pit in 2010. Because it wasn’t life-threatening, the busy teenager didn’t worry about it. But six months later, the tumor had grown to the size of an apple. So, she had surgery on Nov. 25, 2010, in Massachusetts, to remove it.
Less than a year later, doctors discovered three golf-ball sized tumors in different spots on the right side of her body. Alicia had surgery again, followed by 25 days of radiation therapy.
“At this point, my doctors were certain the tumors wouldn’t come back,” says Alicia, who then moved to Texas to attend Texas A&M University in College Station.
Finding MD Anderson and a desmoid tumor diagnosis
During her first semester, Alicia felt another lump. “I totally broke down,” she says.
When she returned to New Hampshire for Christmas break, her doctor started her on the drugs Sulindac and Tamoxifen for one month. They didn’t shrink the tumor.
Frustrated, she returned to Texas, where she met another young cancer patient. He told her to go to MD Anderson. Alicia completed an online self-referral and had her first appointment on Feb. 25, 2013.
Under the care of MD Anderson medical oncologist Anthony Conley, M.D., she learned she had a desmoid tumor. “With the right diagnosis, I felt like I was finally going to get the right treatment,” Alicia says.
Rounds and rounds of drug therapies
Alicia tried another chemotherapy drug, but it didn’t kill the cancer either. Scans showed a cantaloupe-sized tumor on her chest and invading her right breast and arm. She then tried several clinical trials, but nothing worked. “I was being crushed by the tumor,” Alicia says. “It was heavy, painful and debilitating.”
Opting for surgery
In March 2016, Alicia stopped the clinical trials and took time off from school.
Then, surgical oncologist Janice Cormier, M.D., reviewed her case.
“Surgically removing sarcomas like Alicia’s often requires a team of surgical specialists,” Cormier says. Alicia’s tumor extended to her cervical spine, wrapped around several ribs, replaced her breast and extended into her arm tissue. To attempt a complete removal of the tumor would require a team of five surgical specialties and leave Alicia disabled. But it was the only option.
“At first, I said no way. I am not going to have my arm chopped off,” Alicia says. She sat in the MD Anderson parking lot and cried.
Two months later, she changed her mind. “I couldn’t deal with my tumor any longer,” Alicia says. “I’m young, and I don’t want to be sick for the rest of my life.”
Surgical specialties join forces
It took two months for Cormier to plan and coordinate the surgery, which also included four other surgeons: head and neck surgeon Amy Hessel, M.D.; neurosurgeon Laurence Rhines, M.D.; thoracic and cardiovascular surgeon Ara Vaporciyan, M.D.; and plastic and reconstructive surgeon Scott Oates, M.D.
True to her personality, Alicia drew hearts on her arm before surgery. She also jokingly offered her surgical team a helping hand for the operation.
When Alicia woke up from surgery on August 17, 2016, she was ecstatic. “I felt a sense of relief that my tumor was gone,” she says.
Living fully as an amputee
Alicia is re-learning to do the things she enjoys, like ice fishing, gardening and cooking. “There are limitations, but with most things I just have to be more creative,” she says.
But body image has been a harder issue to overcome. “At first, I looked in the mirror and didn’t like what I saw,” Alicia says. “Then, I realized I had to change my outlook.”
Alicia focuses on looking healthy. And, with her mom’s help, she sews her clothes to fit her new body.
Alicia plans to return to college to graduate in December 2017. Her motto: Keep moving forward.
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“I wasn’t allowed to eat for two days prior to surgery, I had to do a bowel preparation, and I was incredibly weak when I was wheeled into the operating room.
After surgery, I was in bed for quite some time,” Jenkins recalls. “When I finally could walk around, it was really painful. After going home, I distinctly remember my husband cooking — the smell of spices made me cough, and the coughing caused such incredible pain that I had to tell him to stop.”
A decade later, when Jenkins’ cancer returned and her MD Anderson doctors determined that surgery was again necessary, she jumped at the chance to participate in a protocol designed to relieve patients’ symptom burden and improve functional recovery.
To her absolute surprise, Jenkins’ experience with her second operation was dramatically different than her first.
“The night before, I enjoyed a family dinner, drank clear liquids until two hours prior to surgery, and didn’t have to endure a bowel preparation that had caused so much discomfort,” she says. “After surgery, I had almost no pain — I was up and walking and was soon eating a full meal. I even felt well enough to talk to my friends and put on my makeup in recovery.”
The principles of MD Anderson’s Enhanced Surgical Recovery Program (ESRP) involve making interventions before, during and after surgery that get patients through their surgery and recovery process much quicker and with better outcomes.
The movement is not new. Rather, it was pioneered almost two decades ago by a group of surgeons in Europe. It’s only more recently that physicians and institutions in the United States, including MD Anderson, have started to look more closely at its components.
Actually, many surgical practices are based more on traditions and previous teachings than sound scientific evidence, explains Pedro Ramirez, M.D., professor of Gynecologic Oncology and Reproductive Medicine.
“The pioneers of the movement questioned many traditional standards of practice that had been ingrained in the care of patients before, during and after surgery, and by doing so, came up with strategies that could benefit the patient,” says Ramirez, an ESRP co-lead. “With implementation, they found that patients were recovering much faster and getting back to their regular activities much sooner, resulting in an obvious improvement in quality of life.”
A gynecology ESRP has already registered 597 patients since its initiation in November 2014. Since then, there’s been a one-day drop in average length of hospital stay, an 80% reduction in opioid consumption and an improvement in patient-reported outcomes, without noting any differences in postoperative complication rates or readmissions. The program also has significantly lowered the cost of caring for patients.
When triathlete Maria Lea De Jesus was diagnosed with early stage cervical cancer in 2014 after a routine Pap test, she feared being sidelined from her sport.
“I run -- a lot. I just can’t sit still,” says Lea, 49. She trains for endurance sports six days a week, year-round. Her accomplishments include completing over 10 marathons and two IRONMAN triathlons – a 2.4-mile swim, followed by a 112-mile bike ride and a 26.2-mile run.
Lea works as an ultrasound technologist at MD Anderson. So, after her initial diagnosis, she asked a co-worker to recommend an oncologist. She was quickly referred to Kathleen Schmeler, M.D.
“I trusted Dr. Schmeler the minute I met her,” Lea says. “She just has a positive aura.”
Simple hysterectomy for a quick recovery
Lea had two biopsies and an MRI to stage her disease and determine the best course of treatment.
Her care team decided that Lea would have a simple hysterectomy as part of Schmeler’s ConCerv trial, an innovative study using less radical surgery for cervical cancer. This approach removes the uterus and cervix as well as surrounding lymph nodes. It’s an alternative to the standard radical hysterectomy, which also removes surrounding parametrial tissue and the top part of the vagina.
“I read a lot about it and knew Dr. Schmeler was only going to take out what was necessary,” says Lea, adding that she wasn’t nervous for the surgery.
She recalls the operating room as all smiling faces. “I remember Dr. Schmeler talking to me and then it felt like I was dreaming,” Lea says. “I woke-up in the post-anesthesia care unit feeling relatively strong.”
The next day, Lea went home.
Back to triathlon training
“The less invasive procedure has fewer side effects and helped Lea get back to work and training sooner,” Schmeler says. Lea completed a half-marathon mountain run in Canada and the IRONMAN 70.3 Austin less than six months post-surgery.
But Lea also values her post-surgery recovery time, which she calls a month-long rest day. “It was the first time I took a break from training since ... I don’t even know,” she says.
During her recovery, Lea woke-up early every morning and walked her dogs. “I was able to think more and feel more,” she says. “It was a totally different experience for me.”
Don’t skip your Pap test
Lea is thankful to have been part of the research for a less invasive procedure for cervical cancer. She encourages other women with early stage disease to take her same path.
But here’s her most important advice to other women: don’t skip your Pap test. Catching cancer early, Lea says, allowed her to have a simple procedure, recover more quickly and go on with her life cancer-free.