Aug. 25--BOSTON -- When Tully Saunders was 3 years old, he developed a rare form
of lung cancer that is nearly always fatal.
Thanks to a treatment designed by Dr. Susan K. Parsons, formerly of the
Dana-Farber Cancer Institute, the Chatham native is alive today.
Now, Saunders, 26, wants to do for young adult cancer patients what
organizations such as Dana-Farber's Jimmy Fund and St. Jude's Children's
Research Hospital have done for pediatric patients.
He has teamed up with Parsons, now at Tufts Medical Center, to spur awareness
and attract researchers to the plight of people from ages 18 to 39 who develop
cancer in the prime of their lives.
Over the past two decades, death rates for pediatric cancer patients -- as well
as for older adult patients -- have plummeted.
But the same cannot be said for older teens and young adult patients.
Six times more likely to be diagnosed with a malignancy than children, these
patients have had stagnant survival rates for almost 30 years, according to a
March report by the National Cancer Institute.
In fact, researchers say people in the age 15 to 29 group are twice as likely to
die of cancer than children under the age of 15.
A new program at Tufts in Boston, the Reid R. Sacco Adolescent & Young Adult
Clinic for Cancer and Blood Diseases, is looking to change those statistics.
Saunders, the clinic's program manager, said it will provide care in an
age-appropriate setting while educating the public about young adult cancers and
encouraging clinical trials among this age group.
The clinic also will provide psychological and social supports, such as a peer
navigator program that will help young adult cancer patients with financial,
social and educational issues, Saunders said.
"Cancer treatment and the subsequent effects of that can be very isolating,"
The clinic opened in January with a gift of $500,000 from Lorraine and Gene
Sacco of Lynnfield, who lost their 20-year-old son Reid to cancer in 2005.
"Not only is cancer in this age group more common, it's more deadly," Parsons,
founding director of the Sacco adolescent and young adult program, said.
Parsons was instrumental in getting the Sacco clinic off the ground, Lorraine
"This physician, she has a passion," she said.
Reid Sacco was an 18-year-old swim champion and violinist when he was diagnosed
with a rare soft-tissue sarcoma, Lorraine Sacco said.
"Not only were there not many treatments for him, there wasn't a place" that was
geared to his age group, she said in a phone interview.
After high school, instead of heading off to Columbia University, where he'd
been accepted, Reid Sacco traveled with his parents from hospital to hospital.
Treatments had to be adjusted up from those conducted in pediatric clinical
trials or down from adult clinical trials, she said.
Doctors would say, "'This worked with this 8-year-old,'" Lorraine Sacco said.
"Or, 'We had this 65-year-old who had something like this.' I met a lot of young
adults (in treatment). They're not here today."
The lack of clinical trials involving the adolescent and young adult population
is a factor in the age group's relatively high death rates, according to
researchers with the National Cancer Institute.
LACK OF SCREENING
The institute's Dr. Nita Seibel said at a conference that research shows that
survival rates correlate with the level of participation in clinical trials --
and older teens and young adults are the least likely participants.
Many people consider adolescent and young adult cancer patients to be an
"orphan" age group, Parsons said.
About 70,000 people between the ages of 15 and 39 are diagnosed with cancer each
year, but their cancers run the gamut, which complicates research and likely
affects outcomes, Parsons said.
Leukemia, lymphoma and testicular cancers are the most common cancers in people
under 24 years old, according to the institute. In cancer patients between the
ages of 25 and 39, cervical, colorectal and breast cancers become more common,
the institute says.
Another issue is lack of cancer screening for people in that age group, Saunders
said. "People associate that time of life with kind of the pinnacle of health."
The Sacco clinic at Tufts is planning a series of lectures to make people aware
of the incidence of cancer among young adults, he said.
Physicians need to take their young adult patients' symptoms and complaints
seriously, said Matthew Zachary, founder of an organization for young adults
called Stupid Cancer.
A former concert pianist, Zachary initially was diagnosed with carpal tunnel
syndrome when he developed problems with his left hand.
At 21, he found out the real problem was brain cancer. "Most young adults don't
have symptom identification awareness," he said, adding that his life "was
entirely turned upside down."
In addition to dealing with symptoms and fighting for survival, young adult
cancer patients also must contend with a myriad of social issues such as dating,
housing, obtaining health insurance, deciding whether to postpone a career or
education, and such mundane matters as getting a driver's license.
"It took me three years to start dating again," said Zachary, 39, who is now
married with twins. "The No. 1 issue that's unique to young adults is
fertility," he said.
Other young adult patients already are parents and may want guidance in
explaining to a 4-year-old why "mommy's hair went bye-bye," Zachary said.
'SHOCKING AT FIRST'
On the Monday afternoons reserved for adolescent and young adult patients at the
Tufts cancer clinic, patients address their psychological, social and financial
issues with a peer navigator after meeting with an oncology nurse and with
There are "the cancer issues and then there are the life issues," Parsons said.
"We have conversations in the clinic about every milestone you can imagine --
from education to vocation, relationships, financial issues and independent
living. Cancer comes at an already complicated time in a young person's life and
makes it all the harder. It can totally disrupt an already challenging
The peers are fellow cancer patients or survivors who are going through the same
things, such as hunting for an apartment or looking for health insurance,
Saunders said. "It really promotes a higher quality of care," he said.
The peer navigation system also offers the services of a social worker and
Parsons said Saunders is uniquely equipped to direct the adolescent and young
Besides being a survivor of early childhood cancer, Saunders helped take care of
his mother, Cheryl Saunders, when she got cancer.
He took a semester off from his business management studies at Boston College to
look after his divorced mother, who died in 2010 at age 58.
"Our roles were reversed," Saunders said.
He dispensed medications, made sure she did physical therapy exercises and took
over the family finances, in addition to cooking and cleaning.
"It was definitely kind of shocking at first," said Saunders, a Chatham High
School graduate who'd been on the school's golf and sailing teams.
Ultimately, his caretaking role gave him the confidence that he could handle
life's challenges, Saunders said.
The goal of the Sacco clinic, which was formally dedicated in April, is to work
with 150 young adult cancer patients a year, Saunders said.
The first group of patients are young adults who have had pediatric cancer, such
as Joshua Cloutier, 23, of Goffstown, N.H.
Like other childhood cancer survivors, Cloutier has regular checkups to look for
side effects of treatment and to rule out any new cancer.
Cloutier said he likes the way the adolescent and young adult clinic is geared
toward people his age, and he enjoys working with Saunders.
"He's gone through something similar," Cloutier said. "He understands. It makes
it a little easier to talk about."
"A lot of this has come full circle, from Susan (Parsons) being my treating
oncologist to my colleague," Saunders said.
"This is significant progress," Zachary said. "At last our generation is being
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