Story of Hope
Learning to Speak Again after Cancer Surgery: Patient, Doctors Persevere for a 'Miracle'
Seven years ago, cancer patient Patrice DiCarlo faced a decision that no one should ever have to make.
With no guarantee it would result in a cure, she could undergo yet another operation (her sixth) — this time to remove the remainder of her tongue, the floor of her mouth, and likely also her larynx, which would leave her unable to eat, breathe normally and speak.
Or she could live out her remaining days — those functions intact — allowing the oral cancer that had plagued her on and off for 11 years to claim her life.
DiCarlo, now 59, a retired executive secretary who lives in Florida, spent two days considering those options.
“I wanted to live,” she says, so the choice was clear. “I decided to have the surgery, whatever the outcomes.”
Making that difficult decision was made somewhat easier because of DiCarlo’s relationship with and deep trust in her longtime head and neck surgical oncologist, Robert Frankenthaler, MD, Chief of the Division of Otolaryngology and Head and Neck Surgery at Beth Israel Deaconess Medical Center.
Frankenthaler, fellowship-trained in head and neck surgical oncology at M.D. Anderson Cancer Center in Houston, began caring for DiCarlo in 2000, when she had a recurrence of the tongue cancer (carcinoma) that had been treated — and everyone believed cured — five years earlier.
Total Faith
Frankenthaler has since performed five operations, including reconstructive procedures, on DiCarlo, whose last cancer was not a carcinoma recurrence, but a new, different type of malignancy (sarcoma) on the opposite side of her tongue.
And, he has overseen her complex care, which in addition to reconstructive surgeries has included radiation therapy, speech and swallowing therapy, dental work, prosthetic devices, and no small measure of moral support.
DiCarlo has “total faith” in Frankenthaler. While at various times she sought second opinions from other specialists around the country, she always circled back to him.
“In addition to being a superbly trained surgeon, Robert is a very caring, compassionate doctor who establishes a personal connection with all of his patients,” says DiCarlo. “He treats me like family.”
She adds, “In my opinion, Robert deserves the credit for the fact that I’m alive and have been cancer-free for seven years, and that I can talk and eat and breathe on my own.”
DiCarlo also acknowledges her longtime speech/language pathologist and the other doctors and health care professionals involved in her care, as well as her family.
‘Nothing Short of a Miracle’
In Frankenthaler’s opinion, however, the credit belongs entirely to DiCarlo. While he was able to preserve her larynx, that certainly did not guarantee that she would be able to breathe and take in adequate nutrition without
a dependence on tubes.
And learning to speak so intelligibly without a tongue is nothing short of “miracle,” says Frankenthaler, noting that it took determination and hard work to achieve that.
“Patrice is an incredible woman who has overcome enormous obstacles to live a normal life. It’s been an honor to be her surgeon all these years,” he says.
The Success of a Multidisciplinary Team
While fortunately relatively rare, head and neck cancers can sometimes be especially challenging to treat, in part because of their close proximity to organs that enable important or vital functions like breathing, swallowing, and speaking.
In addition to possibly affecting these functions, treatment, which may include surgery as well as radiation therapy and chemotherapy, can also affect a patient’s appearance. As a result, patients benefit when they have a multidisciplinary team of surgeons and other specialists working collaboratively to develop and administer a comprehensive treatment plan that addresses all their anticipated, and frequently complex, needs.
At BIDMC, for example, the core members of the multidisciplinary Head and Neck Surgery team include Frankenthaler, medical oncologist Elizabeth Buchbinder, MD, radiation oncologist Anand Mahadevan, MD, plastic and reconstructive surgeon Samuel Lin, MD, and speech and language pathologist Colleen Frayne, CCC-SLP.
This team involves other health care professionals, such as dietitians and social workers, as needed, to ensure that patients receive all the services they need in a coordinated fashion. The types of conditions the team treats include cancers and non-malignant conditions of the oral cavity, advanced cancers of the skin in the head and neck region, chronic salivary gland infections, and HPV-associated growths.
Focus on Quality of Life
The team meets weekly in a multidisciplinary conference to develop an individualized treatment plan for each patient that offers the best chance of cure with the fewest possible side effects.
The latter goal is paramount, says Frankenthaler.
“We don’t focus solely on treating the person’s cancer, but treating each patient as a unique individual who deserves a good quality of life.”
In addition to a highly experienced team of doctors, the team has access to the latest technologies for diagnosis, staging and treatment, including noninvasive targeted radiation treatment with BIDMC’s CyberKnife, as well as many in-office treatments. Patients also have access to clinical trials through the Dana-Farber/Harvard Cancer Center, of which BIDMC is a founding partner.
Since her last operation seven years ago, DiCarlo, a stylish woman with a playful sense of humor, fully embraces the life she has fought so hard to keep. She goes on cruises, enjoys time with her large circle of family and friends, cooks (although she cannot swallow solid foods, her sense of smell allows her to enjoy foods and she is a master at creating nutritious fare in a blender), and spends time virtually every day at the beach, a place that has sustained her through her many challenges.
“I’m proud of the woman I’ve become,” says DiCarlo. “Despite all my adversities and with my fantastic doctor and family at my side, I’ve never given up. And it’s all been worth it. I have a wonderful life.”
Frankenthaler notes that DiCarlo is a shining example of his firm conviction that patients should not give up — that there is always hope.
“When patients and their doctors persevere together,” he says, “miracles can and do happen.”
Above content provided by Beth Israel Deaconess Medical Center. For advice about your medical care, consult your doctor.
Posted March 2013