Rare Cancer Requires Specialized, Caring Team
Jillian Rossello wanted everyone to forget that she had been an ER nurse at Hoag.
“Act like I don’t know anything,” she’d tell her
doctors and nurses. Because, in the case of her rare form of sarcoma,
she really didn’t.
At the age of 28, Rossello was diagnosed with dermatofibrosarcoma protuberans
(DFSP), a tumor that grew between the skin and muscle on her right leg
and represents about 1% of the already uncommon soft tissue sarcomas.
So unusual is a diagnosis of DFSP, that Rossello said her cancer support
group’s mascot is the unicorn.
A rare cancer requires a highly specialized oncologist, which Rossello
found in Nader A. Nassif, MD, an orthopedic oncologist who has developed
an expertise in treating tumors of the soft tissue and bone.
“If Dr. Nassif had not been part of the group, I would have had to
leave Orange County” for treatment, Rossello said.
“From the first moment I met him, he said, ‘We’re going
to be friends for the next ten years. I’m going to see you get married
and have kids,’” Rossello said. “He’s been very
reassuring.”
He has also been thorough. After removing “a large chunk” of
her thigh, Nassif discovered that Rossello’s tumor was rapidly growing
and that the nurse would likely need radiation. Radiation would decrease
the likelihood of recurrence from 14% to 5%, but radiation itself could
also induce sarcoma. He presented her case to the tumor board, a “meeting
of the greatest minds,” as Rossello described it, so she was confident
in the treatment choice. Even if she was scared.
“He took the time to let me sit in the office and cry,” she
recalled. “But because I know the physicians and the kind of care
that you receive at Hoag, I knew that if that’s the recommendation,
that’s what you need to do.”
Rossello’s time as an ER nurse at Hoag did not afford her much contact
with the radiology team, and the patient said she was very impressed with
group. Setting up for radiation therapy takes much longer than actually
performing radiation therapy, and the technicians would use that prep
time to reassure Rossello, answer her questions and put her at ease.
“The radiation team is all really knowledgeable,” she said.
“They were patient and would explain things to me.”
Dr. Nassif walked her through all the steps of her treatment, from the
wide excision he was going to make in her leg, to the radiation and physical
therapy she would require afterward.
He answered all her questions. Assured her at every step. And when Rossello
called late one afternoon complaining about a reaction to her wound dressing,
Nassif saw her early the next day.
Dr. Nassif also recommended that Rossello take advantage of Hoag’s
Nurse Navigator program. “He said, ‘I know you’re a
nurse, but I also know that it’s hard being on the other side.’”
He was right.
Lori Berberet, an oncology nurse navigator, helped her with paperwork,
coordinated her various appointments, called to check in on her and answered
any questions that Rossello forgot to ask.
“It was scary going through this patient experience without my nursing
helmet,” Rossello said. “Having that personal touch, knowing
what your personal situation is, was so helpful.”
Rossello describes her treatment as “amazing.”
“When I was going through this, I wondered if they were giving me
better care because I had worked at Hoag,” Rossello said. “But
this is really what they do all the time. The whole group, they really
do emit that culture of family and caring and compassion.
“They all really took the time and gave me what I needed.”