Cape Cod Times (Hyannis, MA)
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," Saunders said.
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 Sacco said.
"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 Parsons.
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 transitional phase."
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 financial counselor.
Parsons said Saunders is uniquely equipped to direct the adolescent and young adult program.
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 heard."
(c)2013 the Cape Cod Times (Hyannis, Mass.)
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